A quick one!

Today’s appointment with my surgeon for follow-up check-up went great. I like it that way. I had a few questions regarding the implanted port, she answered them and all is well. I don’t need to see her again for another three months.

Next appointment is Tuesday, July 5^th, with my regular doctor. Have various questions and concerns. My hot flashes, that started three years ago, are driving me nuts. I thought they were bad before. HA! They have turned into full body hot flashes now. And with the weather being so hot, they are interfering a lot with anything I try to do to cool down a bit.

For “fun”, I added up doctor appointments, tests, and surgery mileage the other day. Since this all began (initial appointment being the mammogram), over the last two months we have driven 876 miles just to accomplish all that has been needed. That doesn’t include the trips for prescriptions and misc. items, so it is actually slightly more than that. Most trips were 42 miles round trip for either a doctor appointment or a test or a surgery. No wonder it seems like we have not been home a lot! Wow, what fun we have been having! What a great vacation that could have been!

Muga Results

On a good note. I received the results of my Muga test. 64%. I am good to go for the chemotherapy they want to do. My first session is still on for July 11^th.

Why can't things be simple? Or at least go as planned?

Went in for the Muga test on Monday to check my heart and make sure it is strong enough to go through the type of chemotherapy I am going to have. This entailed another trip to nuclear medicine. Wonder how a Geiger counter would react around me these days? Heck, if things keep going at this rate, I should be able to pull off a really cool Halloween trick this year by glowing in the dark. No extra accessories needed.

I will know the results of the Muga test later this week. I also stopped by the chemotherapy room so the nurse could check the condition of my veins in my right arm. This was necessary to see if they will be able to withstand eight chemotherapy sessions. As it turns out, they probably won’t. She couldn’t even get a vein to surface. So, she put in a call to my surgeon, Dr. B. to recommend my getting a implanted port put in my chest.

An implanted port is put under the skin, normally on your chest, directly into a vein. It is used for drawing blood and giving medicines such as the chemo directly into the vein. For people like myself, who only have one arm that veins can be used and those veins are not reliable (rolling over, ballooning up, collapsing etc.) it makes the process a lot easier.

Dr. B. had me come in Wednesday to discuss it. She said she could do it Thursday and that it is a simple procedure. Short and sweet……should only take about an hour to do. Light anesthetic to induce “twilight sleep” along with local anesthetic in the area where the port would be placed under my skin. I would be awake but not able to feel anything. The anesthetic is one of those where if asked a question, you tell the truth, the whole truth and nothing but the truth. Oh, boy, guess this wouldn’t be a good time to have Mom drive me! I have no doubt she still has questions she would love to ask after all these years!

The appointment is made. Thursday morning, Ed and I arrived at the designated time, 7:30 a.m.. I check in, we are taken to my room and I put on the stylin’ gown and robe. And there we sit. At 8:45 a.m. the nurse tells us that my surgery has been bumped due to another surgeon needing the room for an emergency surgery. No problem. I feel bad though for the person that has to have the emergency surgery. Don’t know what it is for, but if it is an emergency, it can’t be good.

At 10:00, they come to get me. I’m off to the surgery room. Everything is going well. I told Dr. B that under no circumstances do I want the anesthesiologist that I had last time and I didn’t get him. Thank goodness. This one was like the first one I had that I liked. He asked plenty of questions and listened carefully to my answers.

They put me on the surgery table and the next thing I know I am waking up in recovery. The key words here…. “waking up”. I knew from the way I awoke that I had been knocked out completely. Warning bells started going off in my head. First-off I wasn’t at all happy that I had been put under. Secondly, I was very concerned as to why. After I got back to my room I received a little more explanation. Dr. B stated that she did the incision on my chest, but every time she tried to put the port in I would start coughing. After several attempts, she had them put me under completely, injected local anesthetic in my neck area, did an incision in my neck and put the port there. By the time we left there and got home, it was after 3:00 p.m. So much for short and sweet!

I have some very mixed feelings about this whole thing and the placement of the port in my neck. I don’t know if it is good or bad or indifferent to have it there rather than my chest. It scares me to have it in my neck. Should I be scared? Will it make it through all the chemo that I will need? Will it cause problems or be uncomfortable to have chemo put in through my neck?

I do know that between the two incisions, I and percocet ended up being very good friends for the next 24 hours. It took forever for the local anesthetic to wear off. My throat was extremely sore and tender and again I was sick to my stomach and had major ongoing heartburn from the general anesthetic.

This time, I am afraid my attitude isn’t the best. There have been too many things that have gone wrong, in too short of time here. I just want to get better. I just want to live. I want to be able to have the various procedures that I need done and have them go as expected. I really hate surprises. Having breast cancer is a big enough surprise. I think that surprise in itself should have superceded and wiped out all other surprises. I think I’ll print up a “get out of surprises free” card and carry it around with me everywhere I go to let people know…..no more surprises.

What was that?

Today, was weepy day. Can’t really tell you why. Don’t really know why. All I know is from the time I woke up this morning, my mood was not the greatest. Way too much worrying about things. Way too much reflecting about things. A little bit of anger tossed in here. A little bit of the “why me” thing, tossed in there. A little bit of everything that made one big mess of my emotions today.

To top it all off, Ed and I had to run to Wal Mart to get my blood pressure pills refilled. It was hot out today and over and over again I found myself seeing females everywhere in these wonderful miniature scraps of material called tops with their boobs out there in plain sight just a bouncin’ along without a care in the world.

When we got to Wal Mart I decided to see what type of bras or camisoles I could find that might “work” for me now. This search was brought on after my becoming completely fed up after looking online earlier in the morning. There I found nothing but items that cost $50.00 and up that I can not possibly afford. I was looking for a mastectomy camisole that would be very pretty and easy to wear seeing as how I can not stand bras. I found a really nice one…..at the wonderful price of $64.95 which, of course, is ridiculous.

The search in Wal Mart ended in disaster as well. And, in the course of the search I snapped at Ed, who was trying very hard to be helpful. Now tell me, just how many guys would take on something that risky as to be in the intimate department of a general store to begin with? But here he was, actually working on helping me get through this and helping me find something. Yet I snap at him. I felt really bad about that, and really mad at myself for snapping at him and really mad about not having two boobs any more and really mad that the industry takes advantage of things like this and gouges people on prices for “specialty items” and on and on. I apologized to Ed and then ended up in tears. Then I was embarrassed that I was actually in tears in Wal Mart of all places and that just made it worse. Ed didn’t know what to do at that point except go grab the gallon of milk we still needed and find a way to get out of that store just a soon as possible.

What a mess. Worse part? Upon reflecting on things, I don’t think the boob issue was really the main issue here. Instead I think it was other things such as the issue of my upcoming guarantee of hair loss, due to the chemo, that I am facing with no answers to yet. And the unknown regarding how my body is going to react to chemo. And the unknown of how the heck I am going find an employer willing to hire me while I am going through this at a job that I will actually like. Or otherwise find a way to make an income while going through all this. And trying to pay the bills and not having the means right now to do so. And the neighbor that we are having a major problem with. (That would take a whole new blog to explain that one!) And dealing with so many things all at once. And already getting very tired of all the doctor appointments, yet knowing they have only just begun.

Yep, it was weepy day. Good thing I am not one to have too many of them. Good thing I know that when I wake up in the morning, I will be able look at things a little brighter, just because that is how I am.

A little more Backwards Forward

………backtracking to my mastectomy and lymph node removal: After surgery, the surgeon informed Ed and I that more than just the Sentinel Lymph Nodes were removed due to cancer being found. The exact number removed would be told in the pathology report. She also stated that she removed yet another tumor during the mastectomy. This one, like the first two, was also good sized at 4 centimeters.

Thursday, 6-9-05. I had my first after surgery follow-up appointment. My daughter went with Ed and me, as this was also to be the day I received the pathology reports.

It was a bitter-sweet appointment. First the nurse removed the outer bandage. Then the surgeon removed the rest of the bandages. Having the bandages off felt wonderful! And at least my first look at my chest was one from the angle of looking down. My husband and daughter faced it straight on. They both stated it didn’t look anything like what they thought it would…..and they meant that in a good way. I too, agree. The surgeon did an excellent job of a very clean tight incision. Actually there are two incisions. One were my breast was and one under my left arm pit where the lymph nodes were removed.

After finding that one of the two drains had slowed down in accumulating fluids, the surgeon removed it. That was a bit painful, but a quick relief after it was over. I was really hoping that both could be removed but one was better than none!

The doctor told me that the pathology report wasn’t in yet. So, the waiting still continued. She assured me that when it came in, she would give me a call. She called the next day. The report confirmed that the third tumor was indeed more of the same invasive lobular carcinoma. The final tally on lymph nodes removed; 20. The tally on lymph nodes with cancer; 4. So here again, bitter-sweet.

I am not happy about the total number of lymph nodes removed, but feel some relief that only 4 had cancer. I am already practicing good behavior with my left arm to avoid Lymphedema and any other problems that can arise. I am very much aware this is not a temporary situation, but instead a life-long change. From here on out, I need to make sure that I do everything possible to avoid cuts, scrapes, sunburn, over heating, strain, excessive pushing or pulling, chemicals, etc on/with my left arm and hand. To insure that I remember that no blood pressure can be taken on that side or needles stuck into that arm, I have already purchased an engraved medical ID bracelet. A purchase, that I am sure, will pay for itself at some point in a big way. Plus, I figure, why take the chance of what could happen if I don’t wear one. I tend to be a tad forgetful at times. I can just imagine three years, five years, even ten years, down the road not giving it a thought and having something happen that sets my left arm off right into Lymphedema. That would not be my idea of a good time!

As far as the missing breast goes, now that it is actually gone, I have come to terms with it. For the most part. It does look strange….. no getting around it. It is very helpful that Ed is so accepting. Of course I wanted to see if I could deal with a bra and prosthesis, so I tried wearing a bra a couple of times. Forget it! I absolutely HATE bras and find them incredibly uncomfortable. I realize that by going without, the first time I receive some comment may be a jolt to me, but I will deal with that as I need to. For those fancier times in my life, I will somehow find a way to buy and wear a prosthesis. I will try to get one of those self-sticky by themselves to the chest things. But around my home….. who cares.

Yesterday, I went back in to my surgeon for my second follow-up appointment. At last, the second drain is removed! Freedom! AND, I can now take a shower again! Heaven! Everything is still looking great and healing well. Next appointment with her is three weeks from now.

Today, I saw my oncologist for the first time. He impressed both Ed and me immediately with his extreme knowledge and the way he listened to my answers to his questions. He wrote down every detail. (Either that or he had a very long grocery list he was putting together!) All kidding aside, I do believe he takes his saving lives and giving people every chance at living very seriously. We discussed the order of things to come. First, chemotherapy, then radiation and last but longest (five years worth), hormone treatments. He stated he needs to make sure that my heart can take the type of chemotherapy he wants to administer, so Monday I go back for a heart test, called a muga test. Once it is established that my heart is good, and after I have more fully recovered from surgery, I will begin chemo (about four/five weeks from now). It will be administered once every two weeks over a total of sixteen weeks. Chemo drugs I will be given: Cytoxan, Adriamycin and Taxol. If my heart isn’t up to this type of chemo, then a different type will be administered and will last a total of twenty four weeks. Doesn’t take a rocket scientist to figure out which one I would rather go through. Yep, either one that keeps me alive!

Backwards Forward

I don’t know why I have been unable to write for the last couple of weeks. Oh, I have tried. I have sat down several times since my last entry...... a couple of words would tumble out through the keyboard and then it would just stop. My mind has been so overwhelmed with so many issues that they all just became one great big jangled mess. I would tug on a thought string only to have it snap back up somewhere into the dark masses. Somewhere, where I couldn’t quite pull it out by itself again. So now I am left to try the catch up method. I’ll give it my best. It may be a rather jumbled path, but I will get to the present somehow. Try to stick with me here and we will go there together.

Last entry, Monday May 30. Since then Ed and I worked on/in the house, moving things around, doing the things that needed to be done and trying to get to some type of household normalcy in preparation for my upcoming mastectomy, lymph node removal, recovery, chemo and what-ever-else I will be going through. But you see there were two problems that interfered here: 1) I have been a dedicated packrat for way too many years and 2) what the heck is normalcy? So we did the best we could with the two and three and more of everything we came across, gasp, even threw some things away. And as far as the normalcy goes, well, we are still working on that one. But, I will take time to mention that the cactus we planted outside are doing great. My daughter just keeps shaking her head every time she walks by them, muttering something to the effect of “most Moms plant roses, but no, my Mom plants cactuses. In Wisconsin, no less!”

Monday, June 6th, I went in for my surgery. I had done such a good job of making sure I was mentally prepared for what was to come, that my blood pressure was actually lower than it has been in years.

Prior to surgery day, I had received the initial time that I was to be there to check in for surgery….10:30 in the morning. Several days later, I received a call from the surgeon’s nurse that the time was being changed to 8:30 in the morning. Then, the Friday before surgery, I received one more call from the same nurse saying that time was once more being changed to 9:30. I joked with her on that last phone call and said we could always just come over at around five in the morning and camp out.

Ed and I left home early. Early enough that, when we arrived, we had plenty of time sit on one of the benches in front of the hospital to enjoy the fresh air, pretty skies and greenery all around us. At about 9:15, we walked inside to check in. When we got to the desk, the admitting clerk couldn’t find my records, but she was finally able to check me in regardless. They took us to my room, and after changing into my sexy gown, they did all the weigh-in, temp taking, blood pressure stuff. From there I was wisked away to nuclear medicine to have the radio-active dye put into my system for the sentinel lymph node detection. It was here that the first hint of a problem became apparent. The nurse mentioned that they had been waiting for me for an hour and was glad I had come in after all. She mentioned they thought I wasn’t coming. I, of course, couldn’t understand why she thought this as I wasn’t even supposed to be there until 9:30. She told me that I had been scheduled for 8:30. I explained that the nurse called me on Friday and had changed it from 8:30 to 9:30. The nuclear medicine nurse checked the records and stated no one had changed them to reflect the new time I was given. So……from here it started to all slide………. My surgeon showed up and let me know she was upset that I was late. I explained that I WASN’T late, I was there at the time her nurse told me to be there. She just gave me this odd look and said her nurse must have gotten it confused.

I was then rushed into the pre-surgery room and I started to panic as my husband had no idea what was happening. I wanted to at least see him before I went into surgery. The last he thing he and I were told was that I was going to be coming back to my room before being taken into surgery. The nuclear medicine nurse was very understanding. She found him for me and directed him to the pre-surgery room.

Then the anesthesiologist comes in. HE ISN”T THE ONE I REQUESTED! The one that was part of the reason the surgery was scheduled three weeks from when the surgeon originally thought it should be done. It was scheduled that way to insure the anesthesiologist that I had when the lumpectomy was done would be the same one for the mastectomy. I had very solid reasons for this request. The one I had during my lumpectomy was absolutely excellent. He listened to me and was so very very careful when putting me under. I am extremely sensitive to anesthetic, I do not wake up well and I have had some other reactions as well. How do I know this? Because I have had enough surgeries in my life to have a very good idea of how my body reacts to general anesthetic. My body does not like keeping it’s parts intact! And it must think that growing things for science projects is fun! (I never gave it permission for this by the way. Back to the signing the donor card way too early in life statement!)

Anyway, this anesthesiologist was a whole lot different from the other one. This doctor didn’t want to hear anything I had to say. Instead, he kept cutting me off and telling me I didn’t know what I was talking about. According to him I couldn’t possibly have a problem with general anesthetic. When I explained that several in my family also have this problem, he said that is impossible. I looked over at my husband and the look on his face was unforgettable. He, too, was in shock at how this doctor was treating me. My husband tried to speak to the doctor and he too was cut off from speaking. Then I looked over at our friend who was there also and he too was in shock. At this point I came very close to just saying “NO WAY! No surgery for me. It will just have to be rescheduled.” But I knew doing that certainly wasn’t going to be in my best interest, so I tried hard to just deal with things. Needless to say, I was now so stressed that I am sure my blood pressure was topping off at some ridiculous area bordering on danger zone. THEN……just when I am trying to deal with it and get my mind into some sort of acceptance and reassurance, a male nurse comes over and in his own words “is going to “try” to put an IV in”, He stuck the IV needle into the vein on the top of my right hand so hard that I though he had gone all the way through. As it turned out, he did push it in too far. For the whole time it was in me, if I so much as moved the hand slightly, it kept stopping the flow and the blasted machine would just beep away. One of the other nurses explained, after surgery, that he had hit something or other in the vein and he had used too much force putting it in.

Well, into the surgery room I went. The anesthesiologist knocked me out right away. Probably to shut me up! Wonder what the conversation was after that!

Surgery was fast and furious. After all, the surgeon had already told me that she was now running behind schedule. What was supposed to take 1 1/2 to 2 hours now just took an hour. Wow, the wonders of modern surgery. I know that Chilton’s manuals for labor needed to remove things on cars can sometimes be off a little bit here and there. Does the same thing apply to surgery manuals? But everything came off and out which was the whole purpose, so surgery was successful.

But wait……then came the recovery room. For some strange reason it took them two and a half hours to wake me up! Could it be, I did know what I was talking about after all? The surgeon had told my husband that surgery went well and that I should be back in my room within an hour. As the hour came and went and I still wasn’t back in my room, he asked, several time, where I was. He just kept getting brushed off with, “oh, it shouldn’t be much longer”. We will probably never know what really went on in that recovery room. I do know that my throat was swollen and sorer than ever before from any other surgery that I have ever had. That includes the one that took a whole lot longer when my left kidney was removed. I also had major heartburn and pain in my esophagus for a week afterwards, not to mention intense nausea upon trying to eat for the first time afterwards.

Upon arriving back in my room, my mind set started in on getting out of the hospital just as soon as feasibly possible. Not because of the bad things that had happened, but because I don’t ever want to stay in hospitals any longer than needed. By this time I had enough morphine and demerol in me that I felt pretty good. It doesn’t take much of that stuff to do that to me. As soon as they suggested I try getting up and walking a bit, I was up. As soon as they said I could eat, I did. (Although that first meal was a tough one!) From there on, it was all uphill. The next day, I was out of there! And I felt pretty darn good!

I will take time here to mention that the nurses I had after surgery were really really nice! I felt very lucky to have them. Very professional and yet very personable. It almost made me feel bad that I was saying goodbye to them so soon when I left!

Home. Maybe it isn’t the fanciest place. Or very big. Or very up-to-date. But it felt so good to pull up in the driveway and walk in. Over the last few weeks, home has become my haven. It is my comfort zone. I think I took it somewhat for granted before. Now I look at entirely differently. It is where I raised my kids from babies. It is where my husband and I share our most intimate thoughts and feelings. It is where I can laugh or cry or be scared and no one can interrupt me…..or see me. It is where I can look at my incisions and learn to deal with them. Where I can try on bras and chuckle at the absence of my left breast and how funny a bra looks that way. Before long, it will be where I learn to deal with the loss of my hair from chemo. All in the privacy of my comfort zone. Home.