Tuesday, February 23, 2016

Drain, Drain, go away!!!!

My 2nd post-op appointment today. The last drain was removed and so I am drain free!!!! One was definitely better than three, but it did get in the way and I haven't been able to take a shower. I can now take a shower, but I can't let the water run over my suture lines too much  aren't supposed to get all soggy and pruny.  I don't care, I am going to be happy to just stand in the water and have it run on my head and down my back. Yea! I still have to wear the ace bandage to help the surfaces stay together with slight pressure and help discourage fluid build up. But only for a week or two more.

I am still limited with arm movements and any type of pushing, pullin, lifting and carrying. I will start physical therapy and radiation in about 4weeks. Doctor Moline did say that I can travel between now and radiation (radiation limiting me only because of it being every week-day for 6 weeks.). So we are looking to take our spring break in the next couple weeks instead of waiting for April. Not that we are planning a tropical getaway. More like going to see baby G! (Oh, and maybe even Carter and Maggie, Victoria and Jesse, too).

That is the latest. I have normal energy, am not in any pain and besides being limited physically am feeling pretty normal. I haven't had to take any kind of medication for pain or sleep or anything. This is very nice. Dr. Moline also said that some others who had mastectomies the same week I did still have drains and are healing slower than I am. I know that my "good health"through all of this can only be attributed to prayers and the Priesthood blessings I have received. Thank you! Thank you! To all who have blessed me in this way. Jeff said that several of his clients have come back and told him that they have been praying for me. So, not only my dear friends and family members, but even strangers whom I may never meet are blessing me with their faith. I am so fortunate not only to have that but also to experience and see the outcome of such an outpouring of love and concern.

Ok, I think that is about all my shoulder/arm can handle tonight. Signing off to watch the final of Kids Baking Championship with the family!

Sunday, February 21, 2016

2 Weeks Post-op

I am feeling really good. I can do most things for myself and a few light "work" around the house. Mostly I am still taking it really easy and not doing anything. I can make some simple food as long as it doesn't involve slicing, heavy lifting or whisking. I slowly mixed the pancakes yesterday and the waffles this morning. I don't do any washing of dishes as I can't lift most things and reaching isn't in my repertoire yet. I can reach with my left hand, but not my right. I am able to switch laundry loads, but can't lift and carry the basket. Yesterday was a working together time with laundry and chores. I don't do any cleaning. It was a beautiful day so we opened the windows for a few minutes- it was 45* so too cold to really to leave them open for long. The girls played outside most of the morning-probably to get out of doing cleaning. Actually they cleaned the bathrooms and dusted, so those are good for another week.

My hair is growing in a little! It is all peach fuzz, but there is a small amount of stubble that I think is actually growing now. It looks dark and regular. I was hoping for curly-after going though all this, you'd think I'd get something fun as a surprise!


We all went to the ward chili cook off and square dance activity on Friday night. I stayed for about half an hour, but A did some line dancing and N came home and performed it for me- she watched and memorized instead of participated. That morning, I went to a family history instruction time at a friends house. I learned some things I've already forgotten and drove the mouse with my left hand or had the person helping me do it. I lasted a long time. I have a regular amount of energy, I just can't do repetitive things or reaching/lifting. What tires me the most is my right shoulder and upper arm get tired and numb to the point of being uncomfortable. So I just really need to lie down and raise my arm a bit or stretch it.

My bicep(or what's left of it- meaning flab, not that it was removed) in my right arm feels all tight and atrophied. I hope I didn't go too long with not moving it at all. I keep trying to stretch it out, but I haven't noticed much difference over the last week of doing that. My armpit is the same, but there was some stuff removed there and I can't really stretch it without more pain, so I am not worried with that until I see the doctor. Tuesday, the drain should come out! I can't wait to take a real shower. I have gotten in there, but just been able to let it hit my legs and lower back.

Wednesday, February 17, 2016

Exit Stage Right

Weird title, I know, but I finally found out yesterday what stage cancer I have. The original pathology report stated that the tumors found were stage I. Then when things got looked at a little closer, the two tumors were found to be of the same makeup, so the size was the whole area the two tumors occupied, not the size of the individual tumor. So, that would make it Stage II. Then some lymph nodes were found to have cancer in them, so that bumped it up to Stage III. Well, after the chemotherapy was finished, an ultrasound measurement, and eventually the tissue looked at, the latest pathology report came back that the tumors had shrunk in size significantly, so that made the tumor measurement smaller, thus almost making the classification to be Stage II again. So, make of that what you will. The Stage is not really a determining factor in how serious the cancer is, unless of course it is Stage IV, meaning the cancer has metastasized to other organs - that is not good.

I am 11 days post-op and feeling really well. I have been told not to do repetitive actions with my arms, and this typing - even on a laptop- is probably pushing that restriction a bit. I will probably not make this very long. Focus on how much you move your pectoral muscle while typing on a laptop. You think it is all just in the wrist and fingers, but there is a lot of slight movements of the arm to reach half the keys. I was never really in much pain. The tissue that was removed contains the nerves, so those were removed as well. I have numbness in most of my chest and my right upper arm. It is like the feeling you get coming out of Novocaine after dental work. More of discomfort than pain. I have some stretching exercises to do and will have some physical therapy to start in about a month.

Dr. Sri went over the pathology report with me. The cancer cells were not completely demolished with the chemo, but neither were they unaffected. They did shrink, but not disappear. They also found that 3 of the 12 nodes removed were cancerous. Because my cancer was triple positive, they have drugs that attack certain of those types of cancer cells. The "triple" refers to Estrogen, Progesterone and HER-2 (a gene) positive. One of the 4 drugs they had me on for the 6 infusions was Herceptin. That specifically targets the HER-2. Being HER-2 positive itself decreases my chance for survival (if I remember correctly what the nurse said), by 25%, but Herceptin treatment increases my chance by 50%. So although HER-2 is bad, the treatment is very specific and effective. I also read that Herceptin was not approved for general use until a little over a year ago, so I am very fortunate to be treated now. That being said, I will continue on with the Herceptin every 3 weeks for a full year - through August. There are some side effects with it, but not as harsh as the other 3. I have some fatigue and body aches for a few days. We are also discussing some anti-Estrogen treatments to suppress my body making that to starve the cancer of it's preferred fuel.

My limitations are: I can't drive myself, as I would be considered an impaired driver if I were to get in an accident, even if it weren't my fault. So I am staying home (oh, darn) and puttering around. I can't use my arms in any repetitive motions - or for lifting. I can't do laundry (more for the lifting, than the switching of loads), and I probably can't do needle work. I was originally looking forward to doing some cross-stitching, but moving my right arm to pull the thread, isn't a good idea at this point. I am also noticing that I can't really lift my right arm very well anyway. That will improve with time and exercises. I can't do dishes and I am very slow when it comes to making simple meals for myself. I was also looking forward to organizing my digital photos and family history. - maybe in a couple weeks. Doctor Moline says to move my arm as if doing a very slow yoga pose. I'm not too good with that...

Jeff and the girls pretty much take care of everything else. They have done wonderfully well with Saturday chores (I may take  my visiting teachers' up on their offer to clean my bathrooms as a good deeper clean is needed every couple weeks when the girls are in charge of that :-). Jeff is an excellent cook and loves to do that, so we are eating probably better than when I am completely in charge of meals. My mother is waiting for her flight right now to go home. She has been here for 2 weeks and has been a huge help. She did all the morning stuff for the girls before school, and took care of me during the day with all that I couldn't do. I am not the most patient patient, and I can be a little snarky when I am not feeling well. But she did all those things for me/us with out complaining and smiled through my curtness. We were both surprised at how much I was able to do from the first, that Mother kept expecting me not to be able to do things, and got upset with me when I did do what might have been too much. But yesterday at my appointment, the doctor said I was healing really well and was right on track for what they expected.

The future that I know about will be physical therapy in about a month and radiation starting almost at the same time. PT will be for my range of motion, but also to help prevent lymphedema which the risk of getting that is higher when you have radiation after lymph node removal.

I guess that is all - I really should rest my arm and do some more of my exercises.

Saturday, February 6, 2016

Speedy Discharge?


Is there even such a thing? In the hospital when you don't want anyone to come in your room, there is a steady stream of aides, nurses, technicians, etc. I was just going in to give myself a sponge bath when the nutritionist (aka, guy from food services) came in to take my order for lunch and dinner. I shouldn't even be here for lunchtime; I'll have beef stroganoff if I am. But have I seen a doctor to ok my discharge? No. Also, the nurse comes in at 4 to give me some meds and then at 4:15 the NAC comes to take my vitals. I guess it isn't possible for them to come at the same time? Absolutely not! Heaven forbid that you rest -which they tell you is the best thing for a good recovery. Besides that, the nurses and NAC are fabulous! It has been fun for me to compare my experience with Tori's experience from just a week ago. I thought for sure in doing that, that I would find her experience to be better than mine. Not really. I guess that just goes to show that nurses truly are angels on earth! No matter which specialty they work in.

My surgery went well. Dr. Moline told Jeff it went as they had hoped and expected. I am not in much pain. I call it more discomfort than pain. In fact, I have taken all my meds about 2hours past the recommended dosage time. And only then just to make sure that the pain doesn't sneak up on me first. I am supposed to use this thing that my iPad won't let me insert a photo from the album on the iPad???-go figure. Anyway, it's a breathing apparatus that I have to inhale about 5 times and do 5-10 times each hour. It is to help prevent pneumonia. It is really hard to take in a deep breath when your chest is wound tightly with an ace bandage. It feels like my ribs are all bruised up. But I am dong it anyway. I have been able to get up on my own and walk around a bit. I am reaching for things and have been able to feed myself. Which is hard to do from a hospital tray since it puts the food at chin level. I keep feeling guilty each time I reach for anything. I pictured that my instructions would be to not move my arms at all. But each nurse has told me that I just can't raise my arms up or lift anything. That makes me so much happier. That I will be able to feed myself, sponge bathe myself and read and do the iPad, etc. Well, I'm out of room on this screen, so I will end. Still waiting for a doctor. I called my nurse to come in so I could talk to her about being discharged. I shouldn't have told her it wasn't an emergency. She hasn't come yet...... I guess I will brush my teeth. Maybe if I try to take a nap, then everyone I need to see will come in! (Of course not at the same time).

Thursday, February 4, 2016

Double or Nothing

I don't have a lot of time to write at this moment, but I am taking the time I have to record something. This afternoon is full through bedtime and I get up at 5 to leave tomorrow morning for surgery.

To re-cap, I left a week ago to go be in SLC for the birth of baby G!
 7lbs 6 oz - 20 inches - yes, he does have jaundice, but he is on day 3 of having a light bed, so they should be able to take him off that tomorrow.

He was born on Friday morning. I got to stay until yesterday and came home about 2 in the afternoon. I have surgery at 7:30 tomorrow morning. This last week was something that will really emotionally carry me through the next couple of weeks. I would go into detail about it all, but I don't have time. Just suffice it to say, he's the most precious thing in the whole world and has made my heart swell to bursting! Tori and Jesse are great parents already, and I had fun watching them do some first time things and worry and stress about some unknown things (like the jaundice and eating, etc.). They handled all that extremely well and are on their way to understanding just what this crazy thing called parenting can do to a person!

I have decided to go ahead and have a double mastectomy. I was considering just doing the right side at this time. The doctor left that decision to me as it mostly has to do with whether or not I could mentally handle the unknown of "what if" - would the cancer come back or manifest itself in the left side if I left that intact. I think I could do that, and I was prepared to do that, but Jeff and I really considered all angles and decided to go ahead and do everything at once.

I am really worried about what to expect the next couple of weeks. I picture myself having to pin my arms to my sides so I don't move anything so it will all heal correctly. I need to do certain things to help stave off lymphadema - which is swelling of the arm - as they are taking most or all of the lymph nodes in my right armpit. I don't think they are taking any left lymph nodes. I cannot do anything with my arms, so I don't know what it will be like to; dress, clean (even with sponge baths), get up and down from a chair, couch or bed. How will I eat, brush my teeth (don't have to worry about brushing my hair), and even hold a book? She said I can't move a computer mouse, but is that thinking of sitting at a computer desk and doing that - or will I be able to use a laptop or ipad? Actually sitting here typing this, I can tell I am using my chest muscles, so I guess not. Can you say STIR CRAZY, BORED, etc??? Mother and I went through all our movies and chose what we may want to watch the next couple of weeks. We also have Netflix and Amazon, so I don't think we'll want for entertainment. Dr. Moline did say that I shouldn't think that I will be house bound, I just can't do anything that requires using my arms - that would mean putting on a coat, so I guess not. She said that I can't drive anywhere, but that I could walk around a store, not carry anything of course.

I guess all these things will be answered by the doctor when she teaches me about my dressings, and other post-op stuff. And then of course I will learn as I go, I am just worried about the unknown at this time. I just can't say enough of how happy and elated I am that I was able to go be with Tori and Jesse at the birth of the dear, sweet, precious little baby. I am so glad they let me be there and that the timing happened before surgery. The next thing is looking at when I will be able to travel for us all to go down there for his blessing. I think that will be about 5-6 weeks out - maybe before radiation starts. If not, we'll have to do it on a long weekend since radiation is a 5 times a week thing for 6 weeks. We shall see again, when the time comes.

Monday, January 25, 2016

What a Difference a Year Makes

I am sitting here with some time on my hands. I have been trying to fill the last couple weeks with projects and errands, knowing that I won't be able to do much after my surgery for a few weeks. I will not be bedridden by any means, but even small gestures with my right side are going to be verboten for at least a couple weeks. I realized this last week that we have been here a year exactly. I am pretty sure the van pulled in on the 23rd and we unloaded and started our life here in Spokane. I did leave part of my heart in Kalispell even though we were there for only a year (well, 51 weeks to be exact), but I am feeling more like this is now home. The year has really flown by, but at the same time it feels like we've been here forever. (in a good way).

Surgery is scheduled on February 1st - a week from today. I have opted for a right side mastectomy with no reconstruction. Dr. Moline did say that this does not completely close the door for reconstruction down the road. I am not thrilled to have something foreign put in my body and so I am going to use bra inserts for my natural look. I am preparing myself to not be able to move my right side for the first couple of weeks. I have been (a little) using my left hand for things like moving the mouse and pulling up my socks. Have you ever tried to pull on socks with only one hand? It's not easy. My mother went and got me a bunch of button up tops. She first sent me a video of some, but they were all size medium. I told her that I was not going for fashion, but for comfort and ease. With my armpit all bandaged up and sore (lymph node removal) I will need to be able to get in and out of tops with ease and the least amount of movement. She then found me some tops in XL and larger. Thank goodness for Value Village and that my mother likes to shop there!

Everyone has been so kind and thoughtful. I am grateful for people who actually follow through on their thoughts and ideas. I come up with great ideas and they come either too late (ie: a great idea for a birthday party game as guest are coming in the door), or I don't follow through with my ideas and thoughts. The biggest thing I am so thankful for are prayers. I know I've said it before, but I can really feel them. I have been carried on angels wings for the last 5 months. My faith in a Loving Heavenly Father and faith and prayers on my behalf have helped me be able to get through the days when I really didn't want to get through those days. They have sustained me to be able to positively head into the next round of chemo, knowing that I will get through it. I am now counting on that same thing to happen with this surgery. I am scared. I am worried. Mostly for the recovery. I really am worried about the possibility of lymphadema. This is where fluid can build up in my arm because of the removal of lymph nodes. I will do all I can under doctor's orders to prevent this. It is just the unknown of all that will be happening with my body healing and recovering that I am worried about. At least the tasting thing will not happen with this next stage of treatment. I will be so happy to never have that happen to me again. A good thing about that is that I don't have a distaste for certain foods that I force-fed myself with during those days that I just had to shove it in so I didn't faint from malnutrition. I think I am pretty much back to being able to eat most anything without any negative effects.

I don't know how the little girls have perceived me through all of this. I really haven't had to seclude myself from them except on 1 day here and there after some of my infusions. I have kept up most of my normal schedule, and been more fatigued than normal. But I know the coming weeks, they will notice a much bigger difference as I just will not physically be able to do a lot of things - and they won't be able to cuddle or give me hugs or things like that. They have been so sweet and helpful when I have needed it, that I am not worried for them. They will have to make their lunches and do their own laundry, which they aren't thrilled about - but they are perfectly capable. I am a bit OCD when it comes to laundry. I actually like to do laundry. I like to know that the clothes are all clean and put away. I have always had one laundry day for the week rather than doing a bit here and there throughout all the week. OH, well, we shall see how this all comes about. Jeff has been even more wonderful than he normally is through out all of this. Of course, he usually does a large percent of grocery shopping and cooking anyway, so we won't starve. But he has been so in tune with what I need and can't do. And then it doesn't bother him if something doesn't get done. Either he'll just go with it or do it himself. I am not worried in the least that there will be things undone or done with complaining (well, maybe a little bit of complaining on the girls' part, but they'll get over it).

The one thing that I am absolutely NOT happy about is the fact that unless he comes in the next 5 days, I will miss the birth of my first grand child. I am so, so sad about this - you don't even know. I am resigned to it, but that doesn't take away the fact that I am sad and that I will miss this once-in-a-lifetime event. I know I will see him later and all that, but this is so irreplaceable. To be there and see a birth and hold a brand-new baby. It just make my heart sad for that. Victoria had been a trooper throughout this not easy pregnancy for her. She is so ready to be over and done with it. She is going to be a great mother and I can't wait to observe that.- They both will be great parents. I am so happy for Victoria and Jesse and look forward to seeing this new little family experience their life.

I've gone on long enough. My hair is growing back in. I have a fuzzy down right now. In fact, yesterday when I took of the scarf I wore to church, the hair was actually flat - it's long enough to be flattened by what I wear on my head. It is not thick enough nor long enough to stop wearing hats, but it is enough that I don't get immediately cold when I take off my hat. It should be another couple months before I can officially be done with head coverings. I did try to wear mascara the other day. I keep saying that I haven't lost my eyelashes and eyebrows. The eyebrows are quite thin and really light (white?), so they are a little hard to see. When I put the mascara on, I noticed that on the upper lid, there are only about 10 lashes on each one, and when I tried to brush it on the bottom lid, there was nothing there - only about 1 or 2 lashes in the outer corner of each eye. I went and got some eye liner instead, so I can look less 'sickly'. I am also noticing that I am tearing more. Maybe that is because there are no lashes to keep in my tears, that my eyes are leaking instead of lubricating themselves.
Now I really have gone on long enough. I am ready for lunch - so I'd better go!

Thursday, January 7, 2016

Surgeon Appointment

Once again I am on my iPad, which does not give me much space to write. I am also in bed wanting to go to sleep. So here is a little bit of what I wrote in an email that sums up what the doctors visit was like today. Still waiting for my tastebuds to revitalize!

Surgery is normally scheduled 3-4 weeks after the last round of chemo. If it needs to be done longer than that, then I will have to have another round of chemo in between. The reason being that we don't want the cancer to get another foothold and start to grow more. The images she showed us from the original MRI and the other images and how she described them while showing us - there is more cancer than just the 2 lumps that make up one larger area. This mass is close to the muscle wall, so that is one reason they had to do the chemo therapy first - to shrink that all down small enough that they can be confident to get all the tissue and surrounding stuff. 
So, surgery - and we decided on a right side mastectomy - will be sometime the week of January 25- probably Friday the 29th if they can schedule it then. It will be about a 6 week recovery from that where I am to do as little movement of the right arm as possible so that the skin can adhere to the new surface underneath. I will then have physical therapy and start radiation after that. There is a small 'area of concern' on the left side that didn't look to be of the same makeup as the other cancerous areas. She said it wasn't something to worry about enough to do a mastectomy on that side also. 
I also will have lymph nodes removed - that is the physical therapy I will be doing afterwards - to prevent lymphadema (accumulation of fluid in the arm due to lymph nodes not there to do their job of draining the arm). 
Forgot to add to the email that radiation will begin 6 weeks post op and go for 6 weeks. Also, the are of concern on the left side looked to be benign. That is why they aren't concerned about operating.