Not a Journey…just a Trip

I am warning you that this post is not a very positive one so if you choose not to read it I will understand.

I used to consider this whole cancer thing a journey but it has become a trip that I am not wanting to be on anymore.

Although I am still healing from surgery with two small open wounds yet on the right side, it has given me time to think and pray…ALOT.

Most of you know that making the choice for Chemo was very hard for me. It went against everything I believed about treating disease in the body. What I have noticed about modern medicine is that they tend to use scare tactics to get you to make a decision that they are happy with. Of course they don’t want to be sued for not giving you what they believe is an accurate treatment plan. The doctors told me that my tumor was 7cm according to an MRI which is supposed to be more accurate than a mammogram or ultrasound. What they didn’t tell me was that these scans can pick up simple inflammation and when read, the radiologist may believe that it is cancer when in reality it is not. I didn’t find this out until after my surgery to remove what was left after the chemo was completed. What they told me was still 3cm of cancerous tumor after the chemo was in reality nothing but healthy breast tissue. All removed and tested.

Oncology just kept telling me that the study they went by recommended certain treatment. I asked for the study and all I got was a paragraph of the abstract from it. No link for the entire study. I have no idea how many people were in it. What their diagnosis was, how old they were, where they were from. Nothing. I was just supposed to trust that these doctors knew what was best for me.

I went to see the radiologist in Appleton and she tells me that the recommended radiation is to radiate the lymph nodes – which I had no lymph involvement at all – and to radiate the entire breast areas for a total of daily M-F for at least 6 weeks. A week later I go see a radiologist in Madison and after consulting with the surgeon who did my lumpectomy she recommends No radiation to the lymph and only 4 weeks of M-F radiation to the breasts. Of course they minimize the side effects and tell you there’s really NOTHING to worry about. You see, radiation can cause cancer. It can also cause lympodema, heart damage, lung damage, damage and breakage of the ribs, just to name a few. Of course there are no studies on what it does to the immune system. If it damages it, which I am sure it does, then how many suffer with constant infections, MS, Lymphodema, diabetes, lupus or neurological disorders for the rest of their life? Where a common cold turns into bronchitis or pneumonia every time. Or that the immune system actually causes cancer to occur throughout the entire body? Of course no information on that because we don’t want people to know that chemo and radiation can cause immune system damage.

I was diagnosed on March 23rd, 2018. Since then I have had 16 chemo treatments, 2 surgeries (went from a DDD cup to a B cup) and am still recovering from the surgeries 10 weeks later. I spent 6 weeks sleeping in a recliner only able to go to the toilet and eat on my own. Then to only being able to sleep on my back in bed for another 3 weeks. Screaming in pain just to take a shower.

We went from being a married couple to being more like a parent/child relationship. To say it was heart wrenching is putting it mildly. Of course if you cry or show any unhappiness in a doctors appointment the dr will automatically go to drugs to help your mood. No discussion of side effects, which some of the drugs can cause suicidal thoughts and withdrawal symptoms similar to oxy’s. But its a “let’s just try it and see how it goes” attitude and if there’s side effects let’s just cross that bridge when we come to it.

Chemo caused menopause for me as it does for almost all women which brought on hot flashes for months now. It got so bad that I was barely sleeping at all because I was either freezing cold or sweating and needing a shower and bedding change. I tried several things and nothing really helped. In desperation I asked the dr for help 3 weeks ago. She put me on effexor normally used for depression and said it helps many women with hot flashes. It did help, unfortunately after a week I began to itch all over and even had hives a couple of times. Thanks for more problems to deal with. After 3 weeks they told me to stop taking it but offered no immediate help and said I would just have to wait 2 weeks until I could see my doctor. So enjoy your side effects from chemo is basically how that went.

I am just DONE. I can’t take any more of this. There is no guarantee that any of the treatments they offer will prevent the cancer from returning. They say that there’s a 30% chance of it returning now but would drop to 10% according to their study, if I have the radiation too. It is more like a guessing game and they are not sure of anything. I took pain killers and round the clock advil and tylenol at the highest dose for 2 months. Who knows what it’s done to my liver or kidneys but the oncologist has no concerns about it. Even though regiments like this have caused liver and kidney damage in people she has no concerns at all. We won’t know if the chemo will cause any heart damage until a year or two down the road as it doesn’t show up before that. Well it’s not her body is it?

Chemo also caused neuropathy in my hands and arms. After chemo my right arm went numb and stayed that way for over an hour so they checked to be sure I wasn’t having a stroke. The diagnosis was neuropathy and I should take more gabapentin. I was taking 300mg a day already and they uped it overnight to 1800mg a day. They never told me that this drug must be weaned off of as it can cause some very severe withdrawal symptoms. Again, advise a drug and offer no information to the patient on how it could cause severe side effects. I had not idea until Tim looked it up online because I was starting to have leg and arm muscle jerks all day long after I had been on it a few weeks. I was just going to quit taking it but that is NOT a recommendation at all. But my doctor never told me that.

Our marriage has suffered, our family life has suffered. My health has suffered. I still can’t open my office due to issues in my left arm from scar tissue and muscle loss due to all the inactivity for 3 months. Tim had to take off from work for over a month to take care of me because insurance would not cover any in home care and we couldn’t afford it on our own. We have suffered financially as a result and Tim has had to take a 3rd shift job so he can still keep his carpet cleaning business going during the day and on weekends. We applied for grants and only a few were able to help us with things like car payments. We have a broken water pipe to fix in the kitchen when it warms up due to the cold temps and insulation to replace.

And today I just found out that I can’t get mileage reimbursement for any of my Madison appointments so I will be canceling those future appointments as they were just follow ups on surgeries anyway. One trip is a full tank of gas. We’ve done wound care for the last 12 weeks at home anyway so might as well just do the rest on our own. It would have been nice of badgercare to tell me the mileage got denied back in December, instead I had to have a social worker dig for the information. But that is government health care for you.

I am just so tired of appointments and clinics and the doctors who don’t want to listen to my concerns. Minimizing side effects like they are no big deal at all. So with that being said I have decided I won’t be doing radiation or take any of the hormone blockers for 5-10 years like they are recommending. The blockers have horrible side effects. I want my life back. I want quality of life. I just pray that what I have done so far has not jeopardized my future quality of life and come back to haunt me later.

I never realized how lonely cancer is. How much it robs from you even if you try not to let it. How many beautiful things it literally destroys. And then our only hope from western medicine is treatments that can cause more cancer. How is this even fair? How can they sit and tell me at my first visit that they want to “cure” me when they have no idea if their treatment will cause more disease and more damage?

I envy those who never feel defeated through all of this. I envy their strength and courage because I don’t have any of that left. I want to laugh again. I want to be happy again. I want to enjoy life and not be sick every day with treatments and medications.

Is all that really too much to ask for?

Slowly but surely…

Hello all.

Unfortunately my body is recovering very slowly since my last surgery on Dec. 7th.

I went from a DDD to about a B cup so there was a lot done for reconstruction plus it was only 2 weeks after the lumpectomies.

My treatment is at a standstill until my wounds heal from surgery.  I saw my surgeon last week and he is telling me that it will be at least 4 weeks until I will be well enough to begin radiation.

I consulted with a radiologist last week as well up here and she is confident that I should have radiation on both sides and on the lymph on the left side where triple negative tumor was.  I will be getting a second opinion next week in Madison to see what the plan will be.

I can tell you one thing I am getting really tired of the 4 walls at home.  I am thankful I have a nice warm and safe home, don’t get me wrong.  But I am frustrated that I cannot do the things I need to do.  I did get out for a few hours to teach a class and it was soooooo nice to talk to other adults and friends and talk oils.  Talking oils is one of my favorite things to do.  Sadly, this class really wore me out.  I slept quite a bit the next day and had a bit more pain than before.  So, this means I need to do things sporadically and hopefully will be able to do more as time goes on.

I am still using some pain killers a couple of times a day.  It helps alot before we do dressing changes as that is still quite painful and so are showers.  Thankful that my husband is so patient with me and helps me do the changes as I cannot physically do them right now.  Just not enough hands.  Because of the pain killers I am unable to drive yet – plus I am not sure how well I could due to the limitation in moving my arms.  Some muscle was cut during surgery and it is going to take some physical therapy to get my range of motion back.  I have not driven a car since Nov. 20th!  It feels so weird.

So my plan is that hopefully I may be able to go back to my office by mid February but no guarantee yet on that.  Again, frustrating because I am a planner.  I need my ducks in a row and they are just scattered everywhere right now!

So I am trying to pick up a duck here and there and get something productive done here and there without setting myself back with my healing.

I find myself fighting off the question of “what if this comes back?”

The radiologist said it is odd that they see non-hormone and hormone positive – basically 2 different types of cancer at the same time.  Many times it is one type of cancer and then years later there may be another type of cancer.  So maybe my body got it all over with at one time??  That’s my hope anyway.

No one can predict the future right?  All I can do is try and focus on health.  Sadly I chemo helped me to gain about 40 pounds and my body is just wanting to stay in the “comfort food” mode.  Which means sugar and carbs is a fight every day.  I am getting more veggies and fruit in though so it is not a lost cause.  Yay me.  Exercise is not on the menu yet, at least not anything more than just walking through the house.  Water, water, water is what I need to push myself for daily.

Hair is growing like mad now, which is a good thing.  But I certainly did not mind not shaving my legs for 8 months.  Note to self DO NOT WAIT 2 MONTHS to shave your legs.  Ever. It took me 45 minutes and I felt like sasquatch before I began.  Tim said I should of used a beard trimmer first!  I think I agree. But I felt 10 times better after I was done.

I really miss taking a bath as I cannot let any of my surgery area soak in water yet.  Only showers for now.  Which are still pretty excruciating to take.  Just the water pressure is painful.  But I am able to wash my hair with warm water now and not worry about it falling out!  1/2 of my hair is now grey but I am unable to color it right now anyway so I have time to consider leaving it grow out or going back to coloring it again.  And boy are those Grimmer eye brows back with a vengeance.  Because I have to lay back in a chair to have a wax done I can’t take care of that until I am healed better.  I am usually pretty low maintenance but this NO maintenance is for the birds.

But for now know that I am ok and getting better.  It has just  been slow and exhausting.  But at least it’s the right direction.

Hey, one great thing?  I can make my own cup of coffee now!  Kinda sad when that is considered progress huh?  lol.  But I’ll take it!

Talk soon

Jeanne

 

LOOONNNGGGG Time No Hear….

I apologize for the long lapse in posts.  I am just now finally getting caught up with social media.

The first surgery on Nov 21st to remove lump and lymph was not to bad.  I was still very sore when I went in for the 2nd surgery to do a reduction.

I feel like a 7th grader again as I think Im a B cup now vs DDD BUT it is me so I dont mind the size change.

I am down to only 3-4 tramadol for pain daily.  I am controlling pain with advil, tylenol and copaiba oil.  I have been spraying the owie spray on the wounds and incisions.

So far I have 3 fairly sized wounds where breast meets chest under each one.  They tell me this is normal and I just need to keep it clean and avoid infections.  Even the water from the shower is excruciating for me.  So showers are slow and painful.  But on the plus side I am using warm water to wash my hair as no more of it is falling out! I am not sure if the curl will still be there tho.  I am crossing my fingers it will be.

Riding in a car (bumps) is NOT pleasant and I have only been to the dr 2 times since dec 15th as far as trips out of the house.  I am finally up to typing and writing while I sit and recover.  Catching up on old partridge family shows.  Reminds me of my childhood and my david Cassidy crush lol.

Right now I can get in and out of bed.  Make a cup of coffee.  Put on robe and slippers.  Toilet and wash fairly good in a shower.  And type and thats about it.  Everything else Tim has been helping me with.  He even gets up in the middle of the night to give me ibuprofen.  He has to take care of kids without me too.  I am sure he is exhausted.  And the weight of our finances is a burden on him as well.  He just tells me to focus on me and he’ll do the rest.  It is hard not to feel guilty.  I never imagined that my husband would be my nurse.

Sadly I have to cancel a morning class next Tuesday as I will not be physically able to do it.  My goal is to be prepared for a big class on the 12th and go from there.  Adding a little each day.

I know this may sound odd but I can’t wait until I can shave my legs AND wax my furry mammoth brows.

Tomorrow I see surgeon for follow up.  And a social worker to apply for another grant.  Pray for good results please.

Next week is appt with radiologist to discuss radiation recommendations from the pathology report.  Not really looking forward to that.

Someone on my cancer fb group described it like this:

Cancer is a tree that may have widespread branches.

Chemotherapy kills the tree and branches.

Lumpectomy removes the tree.

Radiation removes the stump and roots.

Thank you for all your prayers and those who have given me wonderful gifts along the way.

I will try and be more up to date with things in the future.

Please pray for my husband.  He has been through so much and has given so much to help me recover.  If anyone could do something for him I would so greatly appreciate it because for the last 6 weeks I have been unable to be there for him or my children.  He’s done it all and taken off of work to do this.  So many thanks to Ken Bartel who graciously offered to combine for a day.  There is still more in the fields but Tim has been here taking care of me.

My heart aches for him and all he’s given up for me.

Thank you dear friends.

May this be a new year with improved changes.  With many great things ahead.

Talk soon.

Jeanne

 

Oh Ice Pack, you are my friend, my buddy, my pal…..

On Friday Dec. 7th I took a very sore body to the operating room again.  This time to do a reduction.  Even though I was a DDD they did have to take out a rather large area of over 5cm from the left side.  For the first week it didn’t look so bad and they seemed to look the same size.  After the swelling began to go down I noticed that there was quite the divot appearing in the left breast.  And the surgeon said it would be more pronounced the more the swelling went down and once I started radiation as radiation can shrink the tissue a LOT.   I see the radiologist next week to go over the plan for that up here in Appleton.

So I sat in the pre-op having the anesthesiologist telling me that there is no other format they can do for this for my type of surgery.  So….I go through a painful marking procedure – with a green sharpie marker, not kidding – as he marks over some of the incisions I had from the surgery from 2 weeks before.

I go in to surgery at about 1:40 (that’s the last I remember anyway) for a 3 hour surgery.  Tim say’s it didn’t take that long and dr was out to talk to him around 3:45 or so.  I don’t remember anything until about 5:30.  I remember bits and pieces after that until about 11:30pm.  I was in so much pain that I didn’t sleep much all night.  BUT I felt ok enough to go home the next day!  which was a plus.  I had a drain tube sticking out of each side of the rib area and they went to little containers as big as my fist that I had to pin to my compression bra.  Still lots of leakage in left incisions areas, even today after they took out my drains.  But without the drains now the swelling will really be going wild.  So ice is my buddy for awhile now.

From Saturday til today I was in a lot of pain.  Oxy’s didn’t really help at all except to make me sick to my stomach and make me sleep.  So after much issue with dr and pharmacy they put me back on tramadol instead.  I was a basket case.  Once in awhile I could put on some oils on my incision areas when I changed bras but that was about all I could manage.  So Tim became my nanny and nurse.  Literally.  He put all my meds (had alieve and tylenol and gabapenton too) in a pill sorter.  He would set an alarm and wake me up at 11pm, 3am and 6 am to make sure I got all the doses of whatever was due at that time. Wasn’t hungry sometimes and that made my stomach hurt more and had to take something so constipation didn’t take over as some of the meds cause that to happen too!  UGH!

I am hoping to sleep in my bed again and maybe the pain will be better as time goes on and I get more sleep.  Recliners do not make good beds.

Now they told me to use anti-bacterial gel on my incisions – like neosporin.  So I will be using doTERRA’s CorrectX on it 2-3x a day.  You didn’t think I would use OTC stuff and not doTERRA did you?

I will also be using Frankincense again on my chest to help with inflammation and it can be used as something to shrink tumors – just sayin.  And of course I will use the immortelle blend around scar tissue to help reduce it.

Will have to have Tim take some “before” pictures tonight when I change my dressings again.

I missed a LOT of events over the last 4 weeks so I hope I can begin to get out more in the next 2 weeks.  But it may be until January before I really feel like it.  At least I hope so as I have a class scheduled for the first Saturday in January!  I see the plastic surgeon next Thursday as long as there is no sign of infection before then.

Time to change my ice pack again.

Thank you for all the prayers and good thoughts I really appreciate them.  I know that’s why I am feeling better.  Today was a really rough day as it is the anniversary of my mother’s death.  She has been gone for 26 years now.  I still remember the day like it was yesterday but like I said on facebook I feel sad because she has missed out on so much that has happened here.  She got to see Jasmyne for a few minutes because when I was released from the hospital she was just coming out of surgery to put a trachea tube in because the tumor in her throat was cutting off her ability to breathe.  The day she was born was the last day I heard my mothers voice over the phone.  2 days later she was trying to nod and smile while she looked at her new little granddaughter.  She would never open her eyes again after that.  13 days later she would leave here and go on to paradise.  I so wish she would have been able to see and play with all 6 of her grandchildren, to see my wedding, to give me insight during this journey but that is not what was supposed to happen.

So thank you for the prayers.  They really helped me today.  I felt more calm then I have in awhile.

Talk soon.

Jeanne

Last surgery

Tomorrow at 1:20 will be my reduction surgery in Madison.

Went off oxys to try and control pain with OTC and was having a REALLY bad time.  By Tuesday I broke down and they put me on tramadol and upped the gabapentin.  Both make you tired.  So I have spent most of the last 3 days sleeping.

Tim has been so great setting an alarm to get my meds when i needed them.   Thank God for him cause this nerve pain in my right armpit and arm is just killin me.

I hope it all goes good tomorrow but I am planning that the rest of December may be very slow and low key since the first surgery has not gone so well the last 2 weeks.

Hopefully I wont be too loopy so I can catch up on some of my reading.

Becca will have the tree decorated when I get home so I am excited!

Emy bought Linkin A Christmas sweater with little bells on it.  He likes it.  Silly dog.

Do me a favor…..if you know of anyone who wants to get in on the FREE Frankincense this month send them this link so they can enroll without having to wait on me.  Plus they won’t miss out on the contest for the free turmeric & myrrh if they order by the 15th.  Just want to help as many as I can to ebjoy free oils even tho I can’t help them personally right now.

Purchase doTERRA Essential Oils

Have a great weekend.  See you next week.  Hopefully I will be at the 2 make n take classes next week and I can see you there.

Jeanne

Important news…

As I sit here writing this I am trying not to cry.

As some of you know I had a post-op appt today with my surgeon.

She removed the tumor – which was larger and what they call triple negative from left breast.  This means it does not respond to hormones.  After chemo it was still measuring on MRI as 5.2 cm.

She also removed a smaller tumor of 2.5 cm that was hormone positive from the right breast.  This tumor grows from estrogen and progesterone but was her2 negative which is protein.  It typically does not respond to chemo but the mammogram said it had and was about 1.2 cm.  However I have learned that yes mammo can be very misleading.

She also removed one lymph node on each side under the arms. This is the first node that the tumor drained to and if any cancer cells would be found in the lymph it would be found there first.

Since the surgery I was worried that pathology would not find clear margins and they would have to go back in and remove more.

Carcinoma is the word for cancer.

The surgeon came in with a 3 page report  from pathology and you will see below why I began to cry.

Here is what it said:

Left Breast lumpectomy:  Posterior Margin:  Negative for Carcinoma
Left Breast Lumpectomy: No Residual Carcinoma

Left Lymph Node:  Negative for Carcinoma

Right breast Superior Margin:  Negative for Carcinoma
Right breast Medial Margin:  Negative for Carcinoma
Right Breast Medial Margin: Negative for Carcinoma
Right Breast Lumpectomy:  Residual invasive ductal carsinoma, grade 1 less than 1 mm

Right Lymph Node:  Negative for Carcinoma

 

So in other words the 5.2 cm blob showing on the mammogram was no longer cancer in the left breast.

The 1.2cm blob on the right was actually less than 1mm of cancer cells.  But with clear margins they are positive they removed it all.

Lymph, as they hoped from other scans were NOT involved at all.

Now I move on to reduction surgery Dec. 7th but am doubting if I really need to or not.  It is hard to tell with all the swelling and I need to speak to the plastic surgeon tomorrow about this.  There are risks to every surgery.

The nerves waking up in my armpits are more painful than the incisions are and I will be posting some pictures of how the incisions are healing with applying the immortelle oil blend.

God has blessed me and given me more time on this earth and I need to figure out what it is that he wants me to do with this gift.  I am strongly drawn to the oils as I know they helped me to fight this disease but I will be doing a lot of praying to hopefully be shown what it is I need to focus on with this gift.  I thank HIM for a wonderful surgeon who listened to my wishes and preserved as much of ME as she could.  I thank HIM for the drs who actually listened to me and did not fight me on using supplements with their treatments.  I thank GOD for my husband who never doubted that this report would happen and for being there for me every step of the way and not abandoning me when I needed him the most.  I thank GOD for my whole family who have shown me their hearts and have been worried about me and loved me even when I was so unlovable.  And I thank GOD for all of YOU!  Without you I would not have stayed positive at all.  You took the time to think of me, send me energy, pray for me, make food for me, call me and text me asking how I was, sending me funny posts and movie lines to make me laugh.  Sending me flowers and beautiful books and priceless gifts.  I am so grateful.

I still have radiation that I will have to endure and pray it will go well.  So by the time I am done with all of this it will be nearly a year since I was diagnosed. I will also need to be on hormone blockers for years to keep any hormone positive tumors from coming back.  This could be a decade or more of daily medications.

My heart is full my friends, and I will be sitting here crying tears of joy and thankfulness tonight.  You don’t know how much you mean to me and I hope some day I can return the wonderful things to you.

Try not to worry about the future because you are not in control of it anyway.  God is in control even when we question it.  Even when we wonder if he really hears us.  He does.  He loves each and every one of you.

Talk soon

Jeanne

 

On the mend

Well I reacted to surgery just as expected.  Took me about 90 minutes to be able to have a conversation and because of that they couldn’t give me the pain killers that help with muscle relaxers so the pain was pretty bad for most of Thanksgiving day.  Ended up staying an extra day.

So far no pathology report yet but they removed one lymph on each side under the arm.  I have a good 3″ incision on each side.  Hurts like hell.  Been putting immortelle on all 5 incisions 3-4x a day and they look fairly good.

They removed the port and that hurts pretty bad too.  But I’m glad its out.

The wires they inserted around the tumors didn’t hurt nearly as bad as the 20 mammograms I had to do while they placed them!  It was awful.  Then they numb your breast skin with ice for 90 seconds and then inject blue radioactive dye under the skin.  Yes ouch.  And wait fir it to go to lymph.  Guess what?  It didnt go there so they inject more.  Then by this time its 130 and I need to start surgery by 230.  I get a girl who has NO TRAINING on how to take back areas from radiology to surgery and she leaves me in one very busy area while she goes to ask directions then by the time she gets back I am grabbing a nurse begging her to get me out of the main traffic hallway after I sent Tim to find me someone who knew what they were doing! Who leaves a patient in a wheelchair in a freekin hallway to go ask for directions???

I was a sobbing mess when I got back as so many things I was told were NOT the way they had stated.

Then a great anesthesiologist assistant gave me iv drugs, fentanyl was mentioned, and the nerve block around my spine wasnt so painful.  I remember it being 2:44 in the OR and then I was back in the original room and I think it was after 6:30

I felt bad cause I didnt get to talk much with Jasmyne and Josh or with Sarah and her daughter.  They all drove a long  way to be there for me and I was not able to be coherent enough to chat much.

Came home Friday and still having a hard time with the lymph incisions.  Advil and tylenol dont even touch it but I have been able to keep up with fluids and supplements.  Very tired and very irritable.  Not looking forward to another surgery in 10 days.

I just pray pathology comes back with clear margins.

Hubby and kids are trying to cook for me, help me with showers, pick up stuff I drop and keep linkin from jumping on me.  Thank goodness i dont have to leave the house until Thursday.  Can’t drive while taking meds either so I’ll have a chauffeur for awhile.

I dont know how some women do this as outpatient.  I admire their strength.

Please pray for positive pathology report.

Jeanne

Surgery…..

 

Surgery will be Wednesday.  We will be going to Madison tomorrow night because I have to check in at 6:15.

It appears that it will take over 4 hours to insert the marking wires around both tumors.  I am so hoping that they give me some good pain killers before they do this.

Surgery will be approximately from 2-430 pm.  And they should be removing the port too.  Can’t wait to get rid of it!

We celebrated Thanksgiving yesterday and all 6 kids were home with son in law and a family friend.  As I said the prayer I couldn’t help but cry because I said maybe thats why the cancer came because without it that dinner wouldn’t be so special with all of us together at one table.  Well, Adam didnt want to sit and I wasnt gonna force him but he still came in the kitchen for some soda lol.

So many prayers from friends and family and so many wonderful gifts from those who care.  It overwhelms me how caring people are.

The neuropathy is still going strong in my arms and hands but the hot flashes are better.  AND my hair finally stopped shedding last week!  It has been 6 weeks since my last chemo.

After surgeries are over I will need to work on all the weight I gained from chemo.  While I do radiation. I was feeling discouraged that I gained back all the weight I lost last year  then my friend said “imagine how youd feel now if you hadn’t lost that weight when you did”.  She’s right.  I’d be feeling really crappy right now.  Again everything I have been doing over the last 5 years was to prepare for this bump in the road.

On a plus side even though I had to temporarily close my office my doterra business has been growing.  ALOT.  In the last few weeks.  God has really blessed me.

Now I just pray for courage for Wednesday.

Ill be back as soon as I recover from 1st surgery.  Reduction will be on December 7th.

Thank you for all the positive thoughts.  I can feel them all!

2 more weeks

Ok so lumpectomies are finally scheduled.  I get to spend Thanksgiving in the hospital!  yay me!  Well,really not that big of a deal.  We were not planning on having the whole family together for the holiday anyway.

I hope we can stay down there the night before as for right now I have to be checked in at 6 a.m. Wednesday, Nov.21st in Madison.  This would beat leaving at 3:45 from home anyway.

They will place wires around the tumors – good news is that they do not see tumor where the biopsy was originally taken.  But it was still excruciating having them look for it all last week.  I still hurt!

Then after they wire me then I go back to OR to get sedated. They tell me no gas and no intabation so they better not be lying or it will take me hours to wake up after it all.  They tell me I may need a drain tube on the left side as the area they remove will fill up with fluid.  Bodies way of trying to heal after this.

I will stay over night and leave on thanksgiving if all goes well.

The plan is to have Charley take Adam to school that day and take care of him til we get home the next day.  Thankfully she will be on a fall break from school.  I’d like to have an adult just check in with them if someone can to be sure all is ok.

Then I wait til the next week for the results of the pathology of the tumors to be sure they got clear margins and hopefully no lymph they remove will show positive.

The blue die they inject to see the flow of fluid through the lymph will make me pee blue/green for a day. Neat huh?  Just another fun fact.

If all is good then I am scheduled for a reduction on December 7th and will stay overnight and will most likely have drains to deal with again.  Not sure what time that surgery will be yet.

So I will be out of commission from 21st until after Christmas.  Not that i won’t be helping people with oils when I can just won’t be teaching classes or be out and about much during this time.  Don’t worry you can still find me on facebook.

I will have Tim diffusing onguard while in the hospital and hopefully pre and post op too.  You know the germs that hang around the hospitals lol.

Neoropathy is better but still there all the time.  It is hard to open jars and get a grip on things sometimes.

Hair is finally stopped shedding and just a few strands here and there.  However, I still can only wash it 2x a week in cool water for next month or so yet to be sure I don’t lose more.  At least I am able to cover up the thin spots and look pretty normal.  Ha, normal, not really sure what that is anymore lol.

Madison is really trying to get me connected with help with travel as well as a social worker who can help with other things too.  Makes me feel a little more at ease.

Still feel guilty if I am not working or doing something productive.  I know I shouldn’t but I do.  Sadly I see some other women post in our cancer group that their family tells them to stop the pity party all the time cause it’s not that bad.  Just deal with it.  How can people be so cruel.  It’s not like this is an ingrown toe nail or something.  Although those are painful for some people it is usually not to life threatening.

Linkin our pitbull follows me all over the place and is like a witches black cat with me.  It is nice to have him hang out sometimes but not so great when I trip over his big feet because he’s right underneath me.  lol.

So things are hopefully looking up and after Christmas will be weeks of radiation.  Won’t know how long until pathology comes back.  The part that bothers me about this is when I met with the natural doctor this week (finally) she was trying to tell me radiation does not affect immune system.  I find that hard to believe as it is radiation – something that can cause cancer and other damage to the body.  But since she had no study she believed it doesn’t harm the immune system as she tried to tell me no taking anti-oxidant supplements during radiation as it can reduce the effectiveness.  I told her that was old school thinking with chemo as they used to say that.  She said that they now have study proving otherwise but don’t have that with radiation.  I can’t imagine what it does to the body and then they tell you don’t supplement at all.  hmmmmmmm.  I lost a little faith in her when she said that.

So we’ll see what happens after Christmas.

Wish me luck and I forbid Tim or anyone else to video me after I am sedated for surgery so NO you will not see anything on social media, and if you do…..you may see an obituary for my husband cause he will be the guilty one.  Just sayin.  Just kidding, I’d only plot his death!

AND ONE MORE THING… if you did not get a chance to see the video that my friend Maria did for me please watch it and share her page Maria Tamayo Portrait.  She did a fantastic job and she offered it all to me for free because I am going through cancer!  Hope my link works.

My video

Night.

Jeanne

So much to say and not enough time to say it….

Hi everyone.  A LOT has happened since the 19th.

On the 22nd I had a breast MRI done to compare it to the original one done back in april.  When I went into the oncologist for blood work (numbers were all recovered from chemo and looked great by the way) they were an hour late getting me in.  So I had about 10 minutes to talk to her and then we had to leave to pick up Adam and do his IEP with his school team.  In this short amount of time she tells me “we recommend mastectomy because tumor did not shrink as much as we would have liked it too.  Of course I am devestated and begin to cry and of course they say “when was the last time you saw your counselor?”  Ugh that pisses me off so much!  Like these dr’s think we are never supposed to get mad or cry when they tell us these life changing things.  Are you kidding me???  Of course I was upset.  The surgeon had just told me a week before that we could do a lumpectomy and reconstruction!  How am I supposed to feel?  All warm and fuzzy?

So the next day I tell oncologist I want a 2nd opinion for surgery.  I tell her Madison because American Cancer society recommended them as being a great cancer research center.  I am set for Nov 1st in Madison at 8 a.m.

I see the surgeon up here on thursday that week on 25th.  She again tells me that although she would recommend mastectomy she agrees with me that lumpectomy can be done and that a lot of tissue will have to be removed.  I tell her I am getting a second opinion and she has no problem with that.  I am really getting pissed off about all of the inconsistency with all of this.  One dr says no it has to be this while another says no we can do this instead.

I am appalled by the inconsistencies across all of the cancer centers in this country.  I am a member of some cancer facebook groups with women all over the world and there are doctors out there who say the following to their patients:

Don’t drink wine or alcohol
Drinking alcohol in moderation even during treatment is ok
Don’t take any supplements what so ever
Supplements are fine and we recommend them
Avoid all sugar
Don’t worry about your diet right now eat what you can
You need a mastectomy with tumor over 5cm
No a lumpectomy is fine for a tumor over 5 cm

And I could go on and on with all of the extreme opposite information being given by oncologists out there. And then they wonder why I don’t just openly trust them!

The next day I wake up with my right hand nearly numb and my right arm hurting and throbbing.  I assume it is neuropathy and after 2 hours and it will not go away like it had before I call my dr.  She sends me to the ER to have a CT scan of my head (yes there is a brain there) to make sure I am not having a stroke which blood clots are common with chemotherapy – another fun fact.  No clots and it’s just neuropathy and they give me some help with arm pain and I hear yet again –

“sorry nothing we can do.  This is just a side effect of chemo.  Not sure how long it will last” I still have it all the time now. some times worse than others.

So I go to Madison and guess what?

I GET TOTALLY OPPOSITE RECOMMENDATIONS!

Oncology surgeon says she sees no reason why we cannot do a lumpectomy with my 5.9 cm tumor and the 1.1 cm tumor in the other side.  They do it all the time.  In fact, they follow all their patients and after 10 years and more there is no higher risk of recurrence than if they had a mastectomy.  That is the same thing thedacare told me up here about recurrence.

However, she then tells me that where the tumors are will not be that noticeable when she removes them at all.  Plastic surgeon can then go in and do a reduction.  I said “I was told it would be a much smaller cup size” and she said “no not that much at all”  I am shocked the difference in information I am getting.  The nurse navigator came in and went through all the details with me and answered all my questions and they will be scheduling surgery within the next 2 weeks.  (they need to do surgery withing 6 weeks after last chemo which was on Oct 8th.)

I tell her the issues I have had with shortness of breath and pounding heart beat and that resting heart rate is always between 90-105 and that my oncologist was not worried about it but she though I should do an EKG to check my heart as again chemo can cause heart damage.

I had an excruciating painful set of mammograms and then an ultrasound and radiology is having a problem getting a clear picture that they need so they can place wires through the breasts to mark where edges of tumors are for the surgeon on the day of surgery.  I will have to get general anesthetic the day of surgery and do a sit down mammogram for them to place the wires – I pray it will not be painful.  Then I go back to OR and they give me a nerve block that will last about 7-8 hours that will numb the entire chest area.  Then they will knock me out for lumpectomy.  And hopefully I will be able to wake up better after surgery but I am not counting on it.  It is an out patient but I am hoping we can stay in hotel down there or they can keep me overnight vs driving all the way home after all that.

After pathology looks at area removed and hopefully says there is clear margins then I will go back in for reduction within in 2 weeks time.  This surgeon too was confident that this type of surgery is very successful in removing all cancer area as well as removing just the lymph that the area drains to from the tumor area.  He then assured me as well that cup size will not be all that much less than it is right now and has agreed to keep me overnight in case I do not react well to anesthesia.  Luckily Jasmyne was there to help convince him that I needed this.  I am so grateful her and my son in law took their day off to help me get through the day.

Finally after 4 pm we are finished and can leave.

The next day madison calls me to say EKG was abnormal and I need to go to ER for an immediate chest CT.  This time looking for clots in lungs or heart.  Thankfully they find none and blood tests come back normal. I need an electrocardiogram to compare it to the original one I had before chemo began and of course my insurance says I need to wait for preauthorization so now I wait.  But they said they are scheduling surgery without the test so I don’t have to wait for that.  I think I will glow in the dark soon from all the radioactive things I have been put through.  Meanwhile I sit and wonder why EKG is abnormal and why dr up here did not look at this a month ago when I stated my symptoms had worsened.  And again, they wonder why I don’t just blindly trust them.

I am hoping I do not have to cancel the next 2 classes I have coming up but it will all depend on the surgery dates.  Hopefully I will have the dates by tomorrow.

The last 2 weeks I have been just a bundle of mood swings.  Angry, sad, happy, disappointed, and repeat.  Not sure to many people want to be around me right now.  So sick of hospitals and clinics.  So tired of this being the “norm” every day.  So tired of hearing “sorry we can’t do anything for you, its just a side effect or we don’t have a lot of options for you financially”  And then they wonder why I cry when I am there.

I begged the Lord for guidance and just to let me know if I was doing the right things, going the right way.  What do I do?  Can you hear me?

The next day I left my counseling appt and was very upset because I had not met with madison yet and I was sad over closing my office and our finances being tapped to next to nothing.  I waited for the nurse navigator to get me to go over filling out a grant form that I wasn’t’ sure I had done right.  I sat wiping tears and blowing my nose.  Out of the corner of my eye I see someone push  someone in a wheel chair and sit near by.  I look away to try and hide my red puffy eyes and then this woman who was pushing the wheelchair is suddenly next to me and she says “I don’t know where you are spiritually but is it ok if I pray for you?”  I just sobbed and was so grateful because I knew right then that God was telling me “I heard you.  I love you”  That woman hugged me and said “I just felt like I needed to come over here to you.”

Just when you think you are alone and wonder if God has heard you suddenly you are reminded.  Thank you for praying for me and for my family.  Every challenge is received differently by each person.  We all react differently and for some a challenge may come easier than the same challenge comes for another.  For one it may be devastating and for another it may be just a small bump in the road.  So please don’t expect all of your friends or family who go through breast cancer to react the same way.  Everyones journey is different even when faced with the same demons.

Hugs.

PS – thank you to my 3 children for taking me to see Bohemian Rhapsody yesterday.  It was such a good movie and again reminds me that everyone has their own demons to try and overcome.  Thank you for spending time with me and playing a board game with me.  It was a much needed break from all the other garbage going on.

Jeanne