June 3 – Well…………..all that I had written since the last update of May fourth has been lost! On June first my hard drive crashed and all of it was…………………….just gone. The computer tech spent the afternoon here installing a new hard drive and all my software. I was right in the middle of downloading photos and my camera bit the dust, too! I can tell you that with all the stuff I have gone through in the past year and a half this about did me in. I felt physically ill because…………..had I backed up my stuff?????????????????? Not for a good long while. Just the other day I was thinking that I really should do that but did I actually do it???????????????????? No! So, Soapbox Sue is here to tell you that losing all the stuff (work, medical, photos, addresses, contacts, favorite info, recipes, etc.) on my hard drive was harder to deal with than dealing with my cancer! With that, I knew it wasn’t my fault but this…………………well, I cannot be mad at anyone but myself. I just about had a major meltdown and truly, just barely, held myself together. I am thinking that maybe I need to join a breast cancer group or maybe it is time for me to see about an anti-depressant. I have been feeling very depressed lately and I do not want to do the therapy thing again. I am all talked out about my past!
I see my oncologist in July and I will see how I am feeling then. I am still fighting the anemia, my blood continues to drop every time I go for testing which is every two weeks. I am down to 10.8 as of May 23. I go again on Wednesday to be tested again. I am beginning to feel a bit lightheaded when I stand up from bending over and I am starting to get chilled again. I actually feel pretty decent though, considering the anemia, as Harold and I had to cut down one of our twenty year old oak trees that got hit by lightning and we did it all by ourselves! So far we have chopped, loaded and hauled away 4,000 pounds of tree stuff and we still have to cut down the trunk. I am Chain Saw Sally for real! I even have my own reciprocating saw! My daughter and grandchildren have been here visiting (they left this afternoon) and two days after the tree cutting weekend we went to Universal Studios Islands of Adventure and I managed to stay the whole day and to go on all the rides with them except the roller coasters. My throat hurt from all the screaming I did (especially on the Spiderman Ride, my very favorite!)! I took it easy the next day but I did it!
I also see my plastic surgeon on Wednesday, too, and I know he is expecting things to be great but for some reason (let’s hope it is something easy to fix!) around the incision from the seroma/implant replacement the skin is red and I am now peeling like a sunburn. What the $#%@#$% is this???????????????? It doesn’t hurt but that could be because there is not feeling in that area due to all the nerves being severed in the original mastectomy surgery. I am no longer leaking and haven’t been since he sewed me up about a month ago. Geez Louise! Worrying about this and the hard drive problem was just about the straw that broke the camel’s back! Everyone here just pretty much stayed out of my way the day of the hard drive disaster, and Harold went out and got take-out for dinner! They could all see I was about to lose it!
June 7 – Well……………I am officially a human pincushion! Pincushion Pearl, that’s me! It is Thursday and since Monday I have been stuck in the foot twice, my arm once and my right boob (poor Dolly, she cannot get a break!) twice. Let’s take them one by one. I am trying not to be Whiney Whitney or Complaining Clara but it is really getting hard to do.
Monday – the foot. Over the years I have developed some fiber???? (cant’ remember the actual name) which are small “scars” that have formed from tears in the flat thingees that run along the bottom of your foot. I have high arches but really never knew it so never wore proper shoes and over time these little tears have built up. They feel like small pellets of gravel or peas. My massage therapist is the one who actually discovered them about a year ago when she was massaging my feet. I had no idea they were even there. Had them checked out and at that time nothing was done because they didn’t hurt but I started to wear inserts in my shoes. Some months ago my left knee started to give me some problems (I have arthritis – just from getting older) so apparently I started to walk a bit funny to ease my knee. Well, of course, over time, that affected my foot and my fiberthingees started to hurt. Ached in the night and we all know that I like my uninterrupted sleep (don’t we all!). They don’t operate on them anymore because then you are just trading one scar for another. The doctor changed my inserts slightly and I have to be conscious of making sure I lead off with the inside of my foot and not let it roll to the outside to keep this under control. But the fun part is that he numbs my foot with this freezing spray that only numbs the outer layers of my foot and then he shoots a steroid into the scar/pellet that hurts. Monday was the second time, one more to go. Lordy, lordy, does that ever hurt!!!!!!!!!!!!!!!!!!!!!! Of course he has to stick it in a couple of different places so I just scrunch my eyes closed, hang on the arms of the chair and cease breathing until he is done. Luckily it only takes a minute or so and I don’t pass out from not breathing! That is the down side, the up side is that after a day my foot feels much better so after the next one in two weeks I will be fine once again. And actually walking properly makes my knee feel better, too. A bonus! There is a moral here. Take care of your feet! He recommends I wear New Balance tennie’s whenever I can and good support shoes for “dress up.” No going barefoot!
Wednesday – Started off in the morning with a visit to the oncologist’s office for my bi-weekly blood test. I drink lots of water and squeeze a soft rubber ball all morning so that it is easier to get into my vein. That was needle number three. They can only use my right arm since I had lymph nodes removed from my left arm in 2003. I knew I would be down more because I am getting more tired and I am getting chilled again. Sure enough, I am down to 10.2 from 10.8 two weeks ago. He has ruled out an iron deficiency and my insurance has changed their guidelines so if you are more than five weeks out of chemo they will not authorize the Burning Aranesp shots. I don’t know if their decision was cost based or if it was due to new info that long term use of Aranesp can cause heart problems. We are retired military and have a government type of insurance called TriCare. Medicare, Medicaid and TriCare all fall under the new rulings. So……………..we are playing the waiting game to see if my body ever kicks in and starts producing more red blood cells. So far the pattern is that I drop 3-6 tenths every two weeks.
Wednesday afternoon I saw Dr. J. He came in and said “How are you?” and I told him, “Other than having a large red area on my right boob that has peeled twice, am now growing a third nipple and my boob is growing again, I am fine.” He looked a bit startled since I was only supposed to be there for a follow-up check-up and when he looked at Dolly he just shook his head. The red area looks to be an infection of some sort, (always possible when you have a foreign body in your body) the peeling would indicate healing but the area is still red and the new “nipple” is a weak area in the scar where the fluid build-up is pushing out. He drew off fluid in two places (that makes a total of five sticking of needles in three days!) and is sending it off to be tested. The fluid was clear so that is a good thing. Depending on what the results are I may have to have a CAT scan to see where the fluid is building up so he can draw it off. I may have to have a drain or a catheter inserted. He is going to go research this more as he does not know why this is happening and the other doctors he has asked just shrug their shoulders! You know, I like to be special but I am really tired of being this special! I go back next week to find out the results and what we do from here. Now, here is the kicker – I have to watch the “nipple” area closely and if it begins to push out more I have to call the office and come in and have it drained so it doesn’t burst! How gross would that be?????????????? It would also create a whole new set of problems.
Came home and went to bed for awhile. One of the cats came and curled up with me, I am sure he knew I needed comfort!
Add all of the above to my hard drive crashing and I really feel like just letting one of the other personas take over for awhile and let me go and hibernate! Physically, I am only tired but I am getting mentally tired, too, so I am really having to fight the depression. I do know that compared to what other people are going through, my problems are small. But……when they are your problems – it really doesn’t matter since they are directly affecting you!
June 22 – Well, finally only good news! Blood is up to 10.6 from 10.2! I know it is only a .4 rise but – up is up! Didn’t do anything different these past two weeks so maybe, just maybe my bone marrow has finally kicked in!
Ran into a friend as I was coming out the door or the doctors office, hadn’t seen her in awhile so went back in and chatted with her. It was a bit surreal to be chatting in the lobby of the place where I got all my chemo treatments and found out my cancer had returned, but nice that I was only there chatting with someone! We both have the same oncologist. She is actually the person who came over to my house after I was diagnosed the first time and had my mastectomy surgery and found out I would have to have chemo. She answered any and all questions for me before I began treatment. Without a doubt she is part of the reason I write these journals. She was at the doctor for blood work, too, so we were discussing our various symptoms and complications from having breast cancer. But we both acknowledged the fact that we were able to sit and chat about it and then get on with our daily lives. We both agreed that “in the grand scheme of things” our problems were pretty minor! Doesn’t that sound encouraging and “positive”!
Dolly of the Perky Twins seems to have stopped growing for the time being. I still have to keep a piece of adhesive tape stuck tightly over the “nipple” in the scar tissue area but Dr. J feels that if I do keep that area compressed, maybe my body will make scar tissue form there to strengthen that area. One can only hope! He has calls in to some doctors that lead breast reconstruction symposiums and when I go back in two weeks to see what is happening he may have some answers as to what the heck is going on with Dolly. If she does not behave and continues to build up fluid, he will insert a drain, watch for a couple of days to see how much fluid comes out, then flush the area inside with something that will actually burn the tissue and cause it to dry and scar and possibly cause my breast to become hard. Whole process would take about two weeks. What a fun choice that is! Right now she is just slightly bigger than Polly and does not hurt. Maybe my whole body is getting back in shape and now it will absorb that extra fluid and quit producing more of it. Again, one can only hope!
I had the last injection in my foot on Monday – Whoowee did that ever hurt, but – I am done and the scar tissue that was causing the problem is way smaller and does not hurt anymore so I am happy. The pain is only for about 30 seconds but it is soooooooooo intense! Harold had another skin cancer removed and is now all healed up and we just looked at each other and said, “Finally, we are both in good places with nothing bad to report!” Hurray!
Mind you, none of this has stopped either one of us from doing what we wanted to do! We cut down, chopped up and hauled away three big trees (he did one all by himself!) for a total of over 6,000 pounds of wood. I was Chain Saw Sally once again! Too bad we didn’t think to get a photo! I painted our bedroom and put up wall border and that involved moving all that big, heavy furniture all over so I could get the ladder in place. We just rested whenever we felt the need. I even took some quick naps in between all that I was doing in the bedroom. I am also getting ready for a big “Art Stuff Sale” next weekend here – I simply must get rid of all the art stuff I have hoarded for the last twenty years – and it is all over the house. I invited half the state of Florida so I hope to have it all gone by the end of the sale. And the studio and Artist Annie are in full working mode – three magazine articles, one book submission, one art museum auction submission, convention submissions and getting ready for my first gallery showing in quite some time. So………….it appears that I am doing quite well!
I have a couple of Brian Andreas (www.storypeople.com) quotes, the first one is my very favorite: “Of course I hang on tight, she said. You can’t believe the kind of stuff that happens when you let go.” Such sweet words for someone who likes to be in control! This next one is what I aspire to; “If you hold on to the handle, she said, it is easier to maintain the illusion of control. But it’s more fun if you just let the wind carry you.” I do love the wind but it seems to have been visiting me in gale force style for these last few years so I am redy for some nice gentle breezes, thank you very much!
One more quote here. It is a bit obscure, but, to me, it is the meaning of life: “This is a very special bike that’s not very good at listening to excuses, so it takes you exactly where you really want to go & if you kick and scream it makes you pedal harder & go up steeper hills until you’re too out of breath to complain & after awhile, if you are lucky, you start to see that it doesn’t matter if you laugh or cry, because it just wants to ride like the wind.”
Photo of the Week – Studio again, this time the corner that is by the main garden. Now that corner is officially finished except for some fancy wood trim around the windows. You can see the tables have work all over them but it still looks so nice in there and it is so pleasant to go to work! So all in all, my life is very good at this point in time. Click on image for a larger view.
Updates will be much further apart now, and that is a very good thing!
Until next time,
Margot a.k.a. Perky Polly Keeper of the Perky Twins, Chain Saw Sally, Soapbox Sue, Pincushion Pearl, Whiny Whitney and Complaining Clara
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