Archive | November, 2009

"One of the most adventurous things left us is to go to bed. For no one can lay a hand on our dreams." E. V. Lucas

10 Nov

Tonight I will dream that there is no cancer left in my body.

I had my first radiation treatment today. Although it was somewhat intimidating – the machinery, the noises associated with the machine doing it’s job etc – it did not seem all that bad.

Then, a few hours later my skin began to sting in places and then an hour or so later, it simply just began to burn. It is not a bad burning sensation. But, it concerns me because I was told I would probably not have any reactions until the second week.

So it went from, “Woo-hoo, one down, twenty-seven to go” (I will have a total of 28 radiation treatments) to “Hmmmm. Not so sure about this.”

But, I will do it, I have to do it and I have to get past it. And, maybe it will be easier after the first week or first few days, not worse like they say. And, they do say that everyone is different – some women experience a lot of redness and pain and some do not. Here’s to being in the group that does not. 🙂

All I know is that I am completely exhausted  (fell asleep today in while waiting for my oncologist – granted he kept me waiting a long time). But,the exhaustion has to be from only getting two hours of sleep last night. I doubt that it was the effect of one radiation treatment.

Well, it is late and I need to get some sleep. Another treatment tomorrow and every week day after that until December 18th. Assuming all goes well – and I am going to assume that all WILL go well.

While the radiation treatment is causing me some anxiety (again, more of the unknown), I am also very glad to have made it through so much – the chemo, the surgery. That makes me feel pretty good to have that behind me.

Please keep prayers and positive thoughts coming my way. I greatly appreciate it.

Much love,

Lisa

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Radiation Starts Tomorrow . . .

9 Nov

Tomorrow is my first radiation treatment. I have gone to what they called a “simulation” (this past Friday). But, I still do not really know what tomorrow will be like. Friday I was put on a table underneath the device that will deliver the radiation beams – – at least that is what I think it was. I am not really sure. In any case, they (the staff) took pictures and made sure “everything lined up properly”. They also brought out that darn black permanent marker and made marks all over the place (on me). And, yes, I do mean one of those permanent markers you would get at the office supply store. It is not the first time I’ve been marked up. But, this went all the way up my neck and was quite visible.

I was originally told that I would get tattoos on Friday, but, that will happen tomorrow instead. The tattoos will be freckle size I am told and I have even seen one on a woman (a woman at the cancer center showed me one of hers). It was tiny. But, these tiny tattoos will be markers for where the external beam radiation is to go. Their goal is to radiate my chest wall and my remaining breast tissue (on my right side – as in my right side – not over or through my heart which is what would occur if it were on my left side – so I am grateful for that – I do not want to radiate my heart). 

Anyway, the staff in the radiation oncology department at Hoag Hosptial are all very nice and I am glad to be getting treatment there. I have a lot of confidence in the staff and in my radiation oncologist, Dr. Cox. He is very personable and he actually reads my file! I know this because I watched him do it. Halelujah . . . a doctor who can and will read! (if you are joining or just starting to read this blog now, well, you would have to go back a few months to read about how I feel about my oncologist – he would never read my file and in general seemed completely uninformed about my personal case. I will have the joy of meeting with him this week. The key with meeting with him is to not let him bring me down. He is an odd individual to say the least. But, I digress – I like my radiation oncologist and he will be seeing me every week while I am going through radiation. A nurse will also see me/my skin every week. And, the weekend of my birthday I get to have two days off of radiation due to the Thanksgiving holiday. That will almost be the halfway point in treatment and a probably welcomed break.

This weekend was relaxing. But, I was very, very disappointed that I was unable to attend the wedding of a really good friend of mind. Unbeknownst to me,I am more at risk now for getting an infection than I was during chemo. So I am supposed to avoid anyone who has been sick or near anyone sick recently and I have to avoid large gatherings. I had no idea. But, it probably explains the two infections that landed me in the hospital since my surgery. What I didn’t realize was that my white blood count has dropped and is below normal. It has been below normal ever since I stopped getting the Neulasta shots (which were given during chemo to boost production by my bone marrow. Well, it worked really well. But, after my last shot, it eventually wore off and my white blood count has been below normal. 

Just as a comparison, my white blood count was never below normal during the chemo. Neulasta works well. But, you can’t just keep taking it. So, I have to wait until my bone marrow starts producing it. The same is the case with my red blood count. I was never anemic really during the chemo, but after surgery (some blood loss) and not having an appetite (so anemia from lack of iron in my diet) my red blood count dropped down to an all time low. It has come back up considerably, but is still lower than it ever was during my actual chemo (and just for some perspective – my last chemo was July 16th).

During chemo I checked my blood results weekly, I always had the office fax the results to me. But, after surgery I was less concerned about my blood counts because I thought (and no one told me anything different) that my bone marrow – no longer under the attack by the chemo – would just start doing it’s job again. But, I was wrong.I am actually more at risk now for catching something than I was during chemo. So, after just getting off of the IV antibiotics for my second infection that required hospitalization, I am finally told that I should avoid crowds, limit my contact to a few people at a time. So, the wedding and the reception were out. I am so disappointed to have missed out on my friends’ very special day. I hope they will understand. I was actually planning on at last making it to their wedding. But, I woke up in too much pain this am to be able to disobey doctor’s orders.

The pain seems to lessen now quite a bit by the afternoon. So that is a big improvement. Of course, who knows what the radiation treatment will bring. But, I am optimisitic (trying to be anyway) about it. everyone reacts differently – some have more burning than of others and more discomfort and pain. But, hopefully my experience will not involve a lot of pain etc. But, in any case, it will pass. And, I will get through it.

Please continue the prayers and positive thoughts – keep sending these my way. I greatly appreciate it.

Much love,

Lisa

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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.

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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

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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.

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