Author: KimJHA

So yesterday I allowed myself to be afraid, and cry, and spent hours talking about my fears with hubby. I also had my pre-op meeting with the plastic surgeon yesterday to finalize paperwork and she could outline and notify my oncology surgeon how to cut on tomorrow’s lumpectomy so I am well prepared for next week’s fix it up and make the left one match surgery. I had to sign a whole lot of pages of disclaimers and descriptions of risks and possible complications that could happen from my mammaplasty (breast reduction on left side). Once I finished that and then had to go over the possible complications of the restructuring of my right breast to make it look normal after tomorrow’s surgery, Hubby has decided I will not be going anywhere other than follow up appointments for the next three to four weeks.
When Dr. Goldberg was drawing on my right breast where she wants Dr. Ali-Jones to cut for the lumpectomy, she started with a half circle the followed the bottom half of my areola (a nice purple line). Then she stared at it a bit and said, that might not be big enough, then drew a line down from the center of the arc to the bottom of my breast. I must have had a look on my face, scared, stricken, maybe my eyes got wide, because she than grabbed about a 1/3rd of my breast at the bottom and said this is about how much Dr. Ali-Jones has to remove Friday. Do you have a preference on your final cup size?

Ummm, wow, I knew a large chunk was coming out, but that really added some perspective as to how large a chunk of my breast was being removed. When I just kind of looked at Dr. Goldberg, she said she could make me a nice B cup or she even thinks she can leave me with a C cup. My response was let’s try for the C cup please. Going from E cup to C cup will be quite a big difference to deal with, I am sure waking up after the surgery on Friday is going to be just a bit of a shock.  They will also be ordering a specific type of sports bra for me to wear for a minimum of 6 weeks during my recovery.  We did ask about the whole underwire thing and Dr. Goldberg said once I am fully recovered I can wear underwire bras all I want.  Next I will have to ask Dr. Ali-Jones.

I face possible infection, excessive scarring, loss of some sensation to all sensation, nipple necrosis, discoloration, excessive bleeding, hematoma, excessive swelling, poor wound healing, and breast asymmetry among a long list of possible complications. Nothing is guaranteed as to the final outcome on how well the two breasts will match. Oh, and just so you know, if any corrections are needed due to complications, insurance may not cover the costs. Nice!

We talk about the pathology report and what happens if it comes back positive for cancer cells in the margin. They are generally looking for a 3mm margin all around. If the report comes back that the margin is not big enough and Ali-Jones decides a little more tissue needs to be taken, Goldberg says that can be done at the same time as the restructuring and reduction. If it comes back that there is no margin then I will most likely have to go back in for a mastectomy. If that happens, Goldberg will place an expander in my chest and we will regroup after I am recovered enough from the mastectomy and discuss rebuilding options.

I was provided with prescriptions for a pain reliever (narcotic), an antibiotic (Reflex), an anti-nausea drug (Reglan) and Xanax for anxiety. Dr. Goldberg forgot to sign the Rx slip so the pharmacy could not fill the pain reliever (Oxycodone). Hubby will have to go back to Dr. Goldberg’s office next week to pick up a new Rx for that.

I made dinner tonight so I have some good food to come home to on Saturday, if Hubby doesn’t eat all the leftovers before then. I made Garlic Mashed Potatoes, Polish Sausage with sautéed onions and peppers and Sauerkraut.

I will pack a bag for Hubby to bring up once I have been taken to a room after surgery tomorrow. I need my pills, a toothbrush and some stuff to help me while away the time I spend tomorrow afternoon/night in the hospital.

I think I am ready for this. My dragon is doing loops making me feel like I shouldn’t have eaten dinner after all. Maybe I should take one of the Xanax tonight…

Life is trying to keep the anxiety dragon at bay

 

Tastebuds continue to improve; I can now taste all dairy I’ve tried so far almost normally.  For a long time dairy tasted horrible on my tongue.  I knew what it should taste like and what I tasted was NOT anything close to what it should have tasted like.  So this is a HUGE improvement.  Fuzzies continue to get longer and more growing in daily.  Not so much on the top of my head, all around the sides, peach fuzz back on my face (I was really hoping that would not come back…) and some on my arms, and in the nether regions.  No leg or armpits yet, and nothing to be seen of my eyebrows or eyelashes.  My nose is not running like a leaky faucet anymore, no only if I am walking outside or extra active.  Same with my eyes, so that is a great sign.

I am trying really hard today to concentrate on the good signs.  Last night was group and my surgery was discussed again.  I didn’t bring it up, I thought I was all good and reconciled with this surgery, and the “reconstruction” that will happen next week.  When I was asked about my surgery and how I was feeling I was all good.  When the group wanted me to go over again what is happening and I told them about a conversation I had with my cousin about starting up a bra exchange for breast cancer survivors, about posting “Hey, I have some barely used 38E’s up for grabs, anyone have…”  that type of thing.  We all laughed thought it was a great idea until one of the gals who is finished with all her treatment (but not all her reconstruction, she needs a couple more surgeries to correct issues she’s had), advised us that once you have surgery you cannot wear underwire bras again, ever…  What?

So that opened a whole new dialog, and everyone who’s gone through surgery, lumpectomy to mastectomy all agreed, they have all been instructed to never wear an underwire bra again.  When I asked them not even after a year or so, allowing all your tissues to heal from the surgery(ies), our group leader, who is a 6 year survivor, said her surgeon stated underwire irritate the breast tissue too much and can create new lumps in the tissue and they don’t want any lumps created, benign or not.

For those of you who have not read the first post of this blog (or don’t remember the info provided in the first post), I have been wearing underwire bras since I was about 16, when I started buying them for myself.  I really liked how they support my breasts and how they make them look.  Elastic band only bras always slid up my breasts and they looked funny in the cups, not natural or even well shaped.  Ok, I figured I’d need to wear spandex tank tops again or sports bras after surgery, for a while everything healed, but the no underwire ever was something new.  Ok, this was all new information for me to take in.  I was ok during group.  We talked about all sorts of things and even had show and tell with my head.   One gal, who just completed her 3rd of 6 chemo treatments (once every 3 weeks), opted to not shave her head when her hair started falling out.  She says all her darker hairs have remained so far.  We talked about how not all my “stubble” fell out once I was done with my chemo pattern baldness looks (remember these photos:)

 

 

 

 

 

 

 

 

 

 

 

 

So she got to see and rub my head last night to feel how much stubble was left on the top of my head. Once she rubbed, everyone wanted a rub, so I walked around the room giving everyone a chance to touch my head and showed them all my pictures. We also talked about how my eyelashes and eyebrows didn’t fall out until the end.

There were other discussions, and our time ended all too soon. When I met up with Hubby after the end of our groups we shared our group discussions on our way home. When I told him about the whole bra thing, he made the statement that my boobs would not be the same after Friday. They will be different, and everything will be alright. I’ll figure it out.

That statement of my boobs not being the same again hit me hard. He was right, as much as I have been trying to be excited about new, perky, 20 year old boobs, I’ve been hiding from the truth. I am terrified of new boobs. I don’t want new boobs. I want my boobs, the ones that breastfed my babies. The ones my husband had fondled when we’re intimate. The ones he secretly caresses in public because he can, and then quietly boasts to me that he has done this intimate act. I am mourning the loss of my boobs, because hubby was right, they will never be the same again. I have to start a whole new relationship with my breasts, and it seems overwhelming right now. I am a 53 year old woman, and I am terrified I will never be me again after Friday. I know that this is stupid and I am wallowing in my fear, and I am better than this. And yet I wallow, and it all started with that one little statement. And I don’t want hubby to know that I was ok until he said what he said. In his group (family and caretakers group), they talk about how you should not say “it will be alright (or ok)” and “don’t worry about it”. I told him if he didn’t say these things to me I would think something is wrong. I just don’t have the heart to let him see he has sent me into a tailspin by saying something else while trying to help me with my dismay over a bra.

I have two days to get myself back together. I cannot go into surgery with this fear hanging on my heart, constricting it to the point that it backs up tears into my eyes and down my face.

Part of my fear is intimacy – sex. There has been none since chemo started. You cannot have any exchange of bodily fluids while on chemo as you can pass the toxic chemicals to your partner. I am sure hubby is waiting for me to say I am ready, but I am afraid. I have no pubic hair, would hubby feel weird about being intimate with a “naked” me? I have no idea what else chemo has effected down there… what if I am “broken” in my vagina? What if it doesn’t work they way it used to? What if it hurts now? I’m afraid to try. And being afraid to try, doesn’t that mean I am broken now? I don’t feel sexy right now. I feel bloated and hairless and everything but sexy. How would he even want to get naked with me? Then after Friday we throw in new boobs, how do I even do this?

So, there you have it. The mess of my brain and heart, still happening 6 months into this journey, and this time it really comes to the forefront because of a stupid bra. Making me face fears I’ve been hiding from.

Life is facing our fears (whether we want to or not…)

This week started out with a trip to my primary care physician to start the process for all the tests I need completed prior to surgery. She completed some of the paperwork and was able to get the required EKG done in her office. I was sent with the orders for the chest x-ray and the lab work needed to complete the rest of the required pre-op prerequisites.

I was scheduled for the chest x-rays on Tuesday. Those were completed at the same imaging office where I had my MRI last September. It’s been 6 months since this whole nightmare started. It seems like yesterday and yet a lifetime ago.

Tuesday was also Support Group. We didn’t go the previous week due to both of us having the cold Hubby so graciously passed to me. Thankfully I didn’t have it as bad as he did. I told him it was because I had a flu shot and he didn’t. I get a flu shot every year, he avoids them like the plague. My cold was not as severe as his and lasted about half the time as his lasted. My Breast Cancer Support Group mostly discussed surgery and hair loss. There are three of us having surgery within the next four weeks. One of them is a gal who just joined our group. It was her first night and when she introduced herself she advised us this is her second battle with breast cancer. Her first battle was 16 years ago. She had a lumpectomy, chemo and then radiation. This time they again caught it early, Stage 1, but very aggressive. They did genetic testing this time and found she is positive for the BRCA1 gene. She is not eligible for another lumpectomy due to already having had radiation. She cannot have radiation therapy a second time. Even if she didn’t have the BRCA1 gene, she would have to have a mastectomy. Because of the BRCA1 gene mutation, she is having a bilateral mastectomy. The room became very silent while we listened to her story and what she is facing this time. She worked the first time she had breast cancer, but because she knows what she is facing this time, she is taking medical leave this time. She doesn’t even know how she managed to work through radiation therapy as she was so tired.

We were talking about hair loss and the fact that I have no nose hairs and how the side effect of this is a runny nose. The new girl agreed, and we talked about how long it took to grow back. Hers grew back before the hair on her head, but Tuesday morning I swore I saw some “long” fuzzies on my head. I couldn’t find them again so figured I was seeing things. We talked about how my research on the website “Beyond the Shock”, showed that for those of us who lost their eyebrows and eyelashes later in chemo, and even after chemo ended, didn’t grow back until much later 6 to 8 months later. There are now two of us who had thyroid cancer before we had breast cancer. Linda who is the other one to have had thyroid cancer said her Endocrinologist says yes there is a link between the two, but her oncologist says no there is not. Linda was glad we discussed our surgeries so extensively as she is working on deciding what she will do come May when she faces her surgery. She just had her 3rd of 6 chemo treatments.

Speaking of fuzzies, after I took my shower this morning I definitely found fuzzies that have grown in since we had my head shaving when my hair started falling out. I’ve always had a little stubble that never fell out. I didn’t grow either. It still has not grown, but I do have some fine little fuzzies that are longer than the left over stubble. It’s so fine and white it’s hard to get a picture of it, but here is an example:

I also noticed this morning that I’m not quite as puffy as I have been.  I still have quite a bit of face puffiness, but it’s a little less today.  I can also taste avocado again!  And bacon almost tastes normal!  Yea, taste buds and fuzzies!  No new nose hair that I can tell, my nose still runs as much as it did before.  No eyebrows either, not even one little hair growing in, and same with my eyelashes, nothing growing in there either.  I’m down to just a few little stubborn eyelashes clinging on.  So yes, my eyes water a lot too.  I walk around with a tissue going from eye to nose to eye and back again.  Nancy in our group said her eyes stopped watering about two months after chemo ended, so maybe next month.

We decided to go see The Shape of Water, which we loved, and then Black Panther today.  First time in forever going out to do something other than, doctor appointment, lab work, grocery shopping and Support Group.  I was so drawn into Black Panther that I was crying at the end when I came back to reality and realized Wakanda is not real so there will be no center in Oakland and no Shuri to be in charge and teach those in Oakland all about the technology.  To pass on that love of science.  There is no T’Challa to announce to the United Nations that Wakanda will now share their discoveries with the world.  Hubby didn’t understand my heartbreak.  To him, this was no different than any of the other Marvel Comic movies.  He liked it, but it’s still just a Marvel Comic.

My neuropathy is not any better, but I know someday it will be.  I did lament to the group that by the end of the day I am ready to just cut my hands off they are so irritated from being used.  It’s not painful, just irritating!  So ready to be done with this.  Same with my feet.  There are times when even just having socks on is irritating.  My acupuncturist is getting more aggressive in her treatment, she’s added additional needles between my fingers and toes now that I am no longer on chemo.  While I was on chemo it was like fighting an uphill battle, but she is hoping that a few treatments with the extra needles may afford me some relief.

I think I’m ready surgery next week.  Still a little nervous about what happens prior to surgery at the Breast Diagnostic Center.  The placement of the wire and the injection of the radioactive dye under my nipple to map the sentinel nodes.  I am also a little nervous of the outcome, but ready to do this.  Next week I have my pre-surgical appointment with the plastic surgeon, Dr. Goldberg.  She wants to go over one last time what will happen on the 23rd as long as the pathology report comes back clean.  This is also where I discuss with her what will happen if they end up having to do a mastectomy after the lumpectomy.

The Toothless Wonder Cat is still coming in every night to sleep.  He’s even learned how to meow at the front door to be let in for the night.  It’s at this time that I know my lap is taken for the rest of the night.

He waits patiently for me to get ready, with a blanket draped over my legs so he can come up.   He usually eats a jar of baby food (spoon fed of course), before he settles in and takes over my lap for the night.  When it’s time for me to head to bed he moves over to the chaise and sleeps there for the night.

 

 

 

 

 

 

 

 

Life is kitty purrs to build my bone density

Today started off the same old boring, but by noon it got a little exciting, vomiting was back. Go figure, 3 weeks out from last chemo and I still get to vomit. Oh the joys. While I was praying to the porcelain god, I was thinking about the last time I had vomiting and realized I had eaten the same thing for breakfast: Trader Joe’s Oatmeal with Ancient Grains. This morning I had it with a little bit of Truvia and a dash of 1/2 and 1/2. Almost three weeks ago when I had my “thought I would die on the bathroom floor” episode, I also had the oatmeal for breakfast, only I had put Black Strap Molasses on it. And while I continued to bring up my breakfast, I continued to think on this and the time before that when I threw up, I also had the oatmeal for breakfast, with some honey and freeze dried blueberries. We thought it was the Chinese food from our favorite restaurant, at the least their Hot & Sour soup, but now I’m thinking it’s the TJ’s Ancient Grains oatmeal. Not eating that again for a LONG time.

Tonight a local Hematologist/Oncologist presented some study findings from the Beast Cancer Symposium held annually in San Antonio, TX every December, at the Cancer Support Community. This is not to be confused with the Cancer Symposium held every June. Hubby was nice enough to drive me over so I could attend the presentation.

One of the studies confirmed the current neoadjuvant (pre-surgical) and adjuvant (post-surgical) chemo plan that I was on is the most effective. Good to know that has been proven; four infusions of Adriamycin and Cyclophosphamide every other week, followed by weekly infusions of Taxol for twelve weeks. I only made it to 10 weeks, but I am going to assume that it was good enough.

Another study was to see if those with lower HER2 scores would benefit from Herceptin therapy. I am triple negative, so I am considered HER2 Negative. When they are testing for HER2 cells (cells that multiply faster than others), they grade the findings as HER2 1+; HER2 2+ or HER2 3+. Only those with HER2 3+ are considered HER2 positive. The study confirmed the current process is correct, there were no added benefits by placing those with lower HER2 cell counts on Herceptin.

For those with Estrogen receptive cancers there was a study done on giving an Aromatase Inhibitor (hormone suppressant) prior to surgery then doing a biopsy two weeks later to see if their Ki67 markers came down. This would indicate that the suppression of estrogen prior to surgery and/or chemo could reduce tumor size and slow down the growth of the tumor. More studies need to done.

Another study was on Biophosphanate Therapy and whether this needed to continue for 5 years or not. This is for those with high risk for cancer spread to bone or osteoporosis. Chemo contributes to osteoporosis. They discovered 2 years of biophosphanate therapy was just as good as 5 years of therapy, therefore there was no reason to continue after 2 years. I do not know yet if I will need biophosphanate therapy. That could be years down the road at this point.
Another study found that Axillary Dissection of Lymph nodes is not necessary if 2mm or less of cancer is found in the Sentinel Lymph nodes; there was no change in life expectancy. This is good news as Axillary Dissection of all the lymph nodes can lead to a lifetime of other issues. If it’s not necessary this will save many women from years of unnecessary pain.

Another study found that a 5% or greater decrease in weight decreases your chances of every having breast cancer.

Based on some questions that were asked of the doctor after her presentation I discovered I probably will have to go through whole breast radiation, which is the standard. I was hoping I could be a candidate for partial breast radiation or reduced RADS, but based on the questions asked and the answers given I am not a good candidate for any reduction in the radiation therapy portion of my treatment.

I did meet a woman who is a 4 year survivor who never got her eyebrows or nose hair back. I really didn’t want to hear that at this point where I am really missing both of those items. At least with eyebrows, if they don’t grow back I can have them tattooed back in, not much I can do for nose hair not growing back. I would have to live with a runny nose for the rest of my life.

Life is praying for new nose hair!

It’s been a week since my last update. That was the day I found out that going up for my family’s Passover observance was going to be out of the question, and I was sad. As I said last week, I perked up on Thursday, only for Hubby to come down with a bad cold. Not the flu, he really didn’t have a fever, and only had body aches the very first day, and since then sneezing, coughing, hacking, gacking, and lots of nose blowing.

Now I have the cold, despite our best efforts to keep it away from me. I have not had any body aches, just the stuffy head, sneezing, coughing, hacking and gacking trying to breathe. I also have confirmed my “reconstruction” date; March 23. I have to be at the hospital at 7:00 AM with surgery scheduled at 9:00 AM. Carolyn is still working on getting approval for an overnight stay vs. outpatient so I can utilize the rider on our insurance that covers the deductible for overnight hospital stays but not outpatient surgery.

The past week has been spent sleeping, eating, sleeping, watching Olympics, sleeping and more sleeping. It seems the further away I get from my last chemo treatment the more tired I am. This has had me searching the Question/Answer section of Beyond the Shock to see what others have experienced. Evidently this is a normal phase post chemo. Also the swelling in my face and losing most of my eyebrows and eyelashes after chemo ended is a frequent result for many going the chemo treatments I did. I noticed most people who lost most of this auxiliary facial hair after chemo ended did not get it back until 6 to 8 months later, and this was for the hair on their heads too. Joy, I get to go back to work sans hair. I don’t mind the bald head part, but I really miss my eyebrows.

I also stumbled across a response from a gal who said her nipple turned blue from the Sentinel Node tracing dye that was injected prior to her lumpectomy. She opted to forego reductions/lift of her other breast and said her left breast is two cup sizes smaller than her unaffected breast. Glad I opted for the plastic surgery, what a pain in the arse to have to stuff one cup of your bra to make it match the other one. I don’t think this would bother my husband, but dealing with such a size variance just strikes me as a royal daily pain to add to the process of dressing.

My taste buds are still off, dairy still tastes nasty on my tongue, but I am noticing a slight improvement in taste of normal foods. My mouth doesn’t taste bad anymore just on its own. The white coating on my tongue is starting to fade. My acupuncturist says the white coating on my tongue is directly related to my digestion. Speaking of digestion, I no longer feel like food is up in my throat after I eat, so that has improved. I tried cutting back on the Prilosec I take in the morning (2 tablets) as it’s much easier to deal with GERD during the day than at night. By 3 PM I was starting to deal with acid reflux and had to chew on a few Pepcid tablets. Even though food is starting to digest faster I still cannot cut back the proton-pump inhibitors yet. Two Prilosec in the morning and one with a Zantac at night still.

The neuropathy has not improved and I found in my perusing of the questions/answers on BTS that I can still lose my nails yet. I have blood spots under some of my nails that started appearing more than a week after my last chemo treatment. These are splinter hemorrhages, caused by the chemo. There were several posts about losing your finger and or toe nails after chemo ended. Best suggestion to keep from ripping nails off is to keep them trimmed very short. Mine are already trashed from the chemo, so keeping them short is not going to be hard.

The chemo rash I developed is slowly clearing up. It only itches occasionally, and it’s not nearly as red as it was before. The swelling in my face has not gone down. I really want my face back. Again, what I found on the BTS website was examples of women who stated they had swelling for 4 to 6 months, and a few even longer after the end of chemo. Most of them complained of the swelling in the legs, feet and hands, mine is mostly my face and fingers. The neuropathy is very annoying. I wake up in the morning and because there has been no pressure on my hands or feet they feel “normal”. The minute I touch something the tingly numbness is back, with occasional pain/ache in my fingertips and toes if I put too much pressure on them. I am getting a little better about not dropping things, but I still have that problem, along with not being able to open jars.

The Toothless Wonder Cat has taken to sleeping in the house at night for the past couple weeks. He asks to come in anywhere from 6 PM to 9 PM and curls up on my lap until we head to bed. Last night Hubby started snoring a really deep reverberating snore that cut right through the bed, pillow and ear plugs to wake me up shortly after falling asleep. There was no way I was falling back to sleep with that kind of snoring happening, so I came out to the sofa. The Cat sleeps on the chaise on top of a blanket I crocheted years back.

Because I am sleeping about 10 hours at night now, Hubby has taken over feeding The Toothless Wonder Cat in the mornings before he wants to go back outside. This morning The Toothless Wonder cat jumped up on the ottoman that was next to the sofa by my head and gently reached over to pat me on the arm with his paw to let me know he was ready for food. I woke to his little fuzzy face right next to mine checking me out while I was sleeping. He was so cute, and it was a nice way to be woken up, soft paw and a small meow.

Next week will start to get more exciting. I start my pre-op appointments so I can be cleared for surgery on March 16, which is the lumpectomy. I start with my primary care physician and take her the list of items that have to be checked off in order to be ready the following week. I know there is an EKG and blood work that has to be done. I believe there is a chest x-ray as well, among other things. Here’s to hoping all my tests come back in a “normal” range so we can keep my treatments moving forward.

Life is snuggling with a soft kitty

Two weeks since my last chemo infusion and I want to feel normal. I don’t, just feel tired, with numb fingers and toes, and no taste buds, no eyebrows and a swollen face still. Everyone in Support Group last night was very supportive, and told me it will take time, a long time. I want it now. I don’t know why I am so impatient. I also told them how moving forward in my treatment plan is exciting but scary as well, being a triple negative person. Most in my group have follow up therapies for the hormone receptive or HER2 cancers. Once I am done with radiation, that’s it. Just follow up scans and appointments to check on me. Grace, who works at Kaiser, told me that she works with a surgeon there who is a 17 year survivor of triple negative cancer. That helped! I can be one of those statistics, one that lives a very long life after triple negative breast cancer.

One of the gals in my support group did tell me why my nose runs so much. She said her Oncologist told her when she was lamenting the impending loss of her hair, that she would miss her nose hairs more, as her nose would run all the time. I looked at her and said is they why my nose runs so much and why I am going through Kleenex like I own stock in the damn company? She laughed, and said yup!  As soon as your nose hair grows back it will stop running so much.  So there is that fun little tidbit of information. Be thankful for your nose hairs, it keeps you from having to constantly wipe/blow your damn nose. I wonder if my eyes constantly watering are from my lack of eyelashes?

Sandy who is two years ahead of me on her diagnosis of triple negative BC is going for her two year tests in the next month.  She told me she is basically a vegan now; as her oncologist told her diet is her only way of combating recurrence. Not sure I can go Vegan, but I can concentrate on a more vegetarian diet. Hubby might like that as well. Once I have the energy to cook again.

As I previously indicated, primary surgery is set for March 16th. Dr. Goldberg’s office called me today to let me know they are trying to secure March 22 or March 23 OR time for my reconstruction/reduction/lift. They did tell me I would not be ready for travel by the weekend of March 30th. I will still be very uncomfortable. This has made me slightly depressed today. I was so looking forward to being able to see my family for our Passover holiday observance. Now I just want to cry. I am trying really hard to not let this disappointment get me down, but I seem to be fighting a losing battle. I just want to mourn the fact that I have become a prisoner to cancer the past 5 months, and just when I had a glimmer of respite, cancer foils the day again. Fucking boob! I didn’t even want to get dressed after they called me. I have stayed in my PJ’s all day.

I know I have so much more to be thankful for, and there will be time soon when I will be able to travel again, even drive myself. There will be a time when my brain will not always go “squirrel” and I completely forget what I am doing, while I am doing it! I know I will be able to see my family again, and I won’t have to worry about my compromised immune system and this horrid flu season. (This will be the first thing I can stop worrying about!) I know there will be a day in the near future when I will be able to taste again, and eventually my fingers and toes will feel normal. But today, today I am just sad that once again cancer rules my life and something I was looking forward to doing is now out my grasp.

Hubby tried to make it better by promising me a trip before I go back to work. We will finally scatter his Dad’s ashes in Pennsylvania and we can swing down to South Carolina to visit with my family there before coming back home. He wanted to give me something to look forward to, and yes, that sounds wonderful, but it has not helped remove the grey blanket that has draped my heart today. Tomorrow will be a better day. I will be excited about my perky new boobs I will have at the end of the surgeries. I will look forward to the end of my treatment, and having hair to play with again, and being able to take myself for a drive around the bend with the top down. Tomorrow, not today.

Life is about tomorrows

 

I know it’s been a few days since I have posted. My life is pretty boring right now. Sleep, watch Olympics, nap, watch Olympics, nap, nap again, watch Olympics then go to bed. I do eat between naps. I know all my doctors keep saying embrace the sleep, which is when most of the healing happens, but I sure would like to note some improvement. I think I don’t take as many naps during the day. Most naps are me just falling asleep while watching the Olympics.

The neuropathy has not improved really. I know Dr. Sikaria said it would take a long time for it to go away, but even a little improvement would be nice. I am counting the days until I can taste again. All my research and talking with those in my Support Group, about a month from the end of chemo until taste buds return. Woot Woot! A little over two more weeks.

At this point I am not sure what I want more, eyebrows or taste buds. I would also like my face back. It’s still very puffy from the steroids and chemo. I tried a little bit of makeup yesterday, but it just looked stupid to me. I kept it on anyway. Some light eyebrows, just a dusting of shadow on my lids and mascara on what’s left of my eyelashes. I felt clownish, but no one said anything and I am sure Hubby or at least Darling Daughter would have said I looked horrible with the little bit of makeup.

We celebrated the Grandson’s 6th birthday yesterday since they will not be able to come over next weekend. Grandson picked dinner – Orange Chicken with rice and broccoli. Darling Daughter cooked and also made a really nice lemon cake with lemon icing. Grandson was overwhelmed with Lego’s, but was excited about the three Play Station games we got him as well.

Dr. Ali-Jones office called me this morning, Surgery is confirmed for Friday March 16th. I have to be at the Breast Diagnostic Center at 7:15 AM and surgery is planned at Torrance Memorial at 11 am. At the Breast Diagnostic Center (part of the Torrance Memorial complex) they will numb my breast and then using a Mammogram and/or Ultrasound they will insert a small wire directing the surgeon (Ali-Jones) to the marker that was left behind during my biopsy. They will then inject a radioactive isotope under my nipple so the Sentinel nodes are identifiable by scan at time of surgery so Dr. Ali-Jones can remove the first two or three nodes to check for cancer cells. A pathologist will check the nodes in the OR, and they will keep removing axillary nodes until they have confirmed the last node taken is cancer free. We’re not too worried as the MRI I had last September showed no nodes indicating cancer and an MRI is really good at picking up cancer in Lymph nodes.

I still have not heard back from Dr. Goldberg’s office about my plastic surgery. I will have to follow up with them to find out what is going on there.

We do have some shopping to do this week, one of my “other” sons is getting married this year and the bridal shower is on Saturday. I am not up to going to the shower all the way out in Pasadena, but we will pick up a gift and give it to his mom so take for us. Plus, it gives another excuse to go visit with his parents up the street.

Life is slowly healing

Despite the elation from yesterday’s decision to stop chemo, today I am just tired. We did go to Costco to pick up my prescriptions that were ready. I forgot I had already called to refill one of them and when I went to ask for refill they said it was already filled. Damn chemo brain.

The Grandson was seen at a pediatric orthopedist over in Torrance this morning to have a cast put on and for the follow up care on his buckle fracture in his left arm. He picked out bright green as the color for his cast. They stopped by after they were done so we could be the first to sign his cast. It had been a while since Grandpa and the Grandson had seen each other, so there was lots of playing and a stint hiding under the folding tables we still have up in the big room talking about all sorts of things.

I finally had to succumb to a nap and told them I just could not stay awake any longer and was going for a nap. That is when the Darling Daughter and Grandson said their goodbyes and I headed to bed. I think I was asleep before my head even hit the pillow.

Neighbor across the street came over with a little gift for me to help celebrate the end of chemo. I got roses and a beautiful wooden box with a tree of life to use it as a wish/hope keeper. Included was a matching card and he put in a poem he had received at the end of his chemo some years back. I love our neighbors!  I also have great support with all my friends in facebook!  I am amazed at how many have responded to my post of “No more chemo!”.  Thank you all!!!!!

Normally we would be at Support Group right now, but I have felt bed calling me for a while now, even after the extra long nap today. We didn’t go to Group as I need to sleep more than I need group today.

I did hear from the surgeon’s office this morning, first surgery will be mid-march, around the 17th. I will have the paperwork in a day or two and that will be final confirmation of when surgery is scheduled. I will have “homework” to do prior to surgery. I will get all that with the paperwork and who I need to see and when. I remember hearing something about another full physical, and EKG and chest x-rays. There were some other things, but I don’t remember. Because we will not have confirmation that clean margins (no cancer cells detected) in the pathology report until 3 to 4 days after surgery, and if there are no clean margins, Dr. Ali-Jones will have to go back in and take out more breast tissue, I am not scheduled for the repair and reduction/lift on my other breast to make it match until about 2 weeks later. I am waiting on Dr. Goldberg’s office to confirm the surgery date for that.

Life is waiting

This morning was my appointment with Dr. Sikaria, well, it was scheduled for almost lunch time, technically still this morning. As promised I told her about two weeks ago I had a two day break from the neuropathy, but it came back worse than before, and it now is painful in my fingertips and toes when I put any pressure on them. Hubby last night asked me if I was OK while I was typing up yesterday’s post, and I replied, “Yes, why?” He said I was pounding on my keys like I was angry or upset. That was when I realized because I cannot feel the keys very well, I am typing harder than I normally would. So there is that.

I also told Dr. Sikaria about the rash that has appeared on my hands and face in the past two weeks, and I told her about what happened yesterday. Told her how it all started, how I fell off the toilet due to the pain and not having the energy to hold myself up anymore, how I thought for sure I was going to die, or end up being taken to ER half naked with a dirty behind. Her first words were “We’re done with chemo. This can all be chalked up to the Taxol, and this is your body’s way of telling us it has had enough, it cannot take anymore.” What a relief! I am still a little scared that not completing all 12 cycles of the Taxol means a recurrence down the road, but I am trying really hard to not think about that. That is a small little dragon that I can tuck nicely away in a corner and not let out.

Dr. Sikaria did schedule me to come back in 8 weeks. I should be done with the surgeries by then and from there I will need to be scheduled with a radiation oncologist for the final phase of my treatment. After that I go into check-up mode. There are no auxiliary treatments to add after all this to try and keep my cancer from returning. Dr. Sikaria said at the beginning she would probably see me every 6 months or so for the first few years.

Now I just need to be patient about my recovery from chemo. She did say it would be a slow recovery process. I know it took over 4 months to get me to this point, so I know it will take months for me to recover as well. But I want the recovery now, not months from now. I want to be able to taste tomorrow, and feel with my fingers, and not feel tired, washed out and drained. I want my face back. I want my real life back. I know that radiation will drain me as well. Even the girls in my Support Group who aced chemo complained about how tired radiation made them. But just for a little bit, I want to feel “normal”.

On a side note, The Grandson is definitely all boy. A few weeks back he ran into a fence at school playing chase with his friends and gave himself a huge hematoma on his forehead. Today, he was climbing a ladder on the playground and fell from 5 feet up. He broke his left forearm – buckle fracture. He’s fine, and smiling for the pictures of the temporary “cast” applied until he is scheduled with an orthopedist for casting. His mommy will be taking care of that first thing tomorrow. In the mean time he’s not allowed to attend school until he is cast correctly.

Life is waiting for surgery

Today was not a good day, not at all. For those with a weak stomach, stop reading now and just know chemo/cancer has a very ugly side.

That said, yesterday was just a normal day, a bit tired, took a nap as usual, watched the Olympics, tried to knit but couldn’t knit for long due to the neuropathy. Knitting made my fingers hurt.

Today started out “chemo normal”, tired, and feeling like I am damp, even though I have not had any really bad hot flashes in a while. I woke up in time to feed the Toothless Wonder Cat. I called him in, but he only wanted to be brushed, he didn’t want to eat. He’s been having mouth problems the past few days and not been eating as well. We try to not worry too much as we know he eats at the neighbors across the street too.

I ate some oatmeal and from there I went to wash up for the day. I needed a shower as well, so took my time as these simple activities really tire me out now. After my shower I had to go lay in bed for a bit before I could even dress, let alone contemplate starting my laundry. After I rested and could get myself dressed, I had to rest a bit again so I could get my laundry together and get that in the wash.

Those two activities completed I went to the sofa to watch the Olympics and try my hand a knitting again. The neuropathy is a little better today, but its still worse than it has been in the past on day 5 of the chemo cycle.

Hubby laid down for a nap, and while he was sleeping our neighbor stopped by with some Hungarian Paprika, both hot and sweet. I owe him a Soy Flour Chocolate Cake with Strawberries. Told him I would get that together for him once I had more energy. He has diabetes, and I know he has a hard time managing his blood sugars. I have tested this Soy Flour Chocolate Cake on other diabetics, and it has been a success with all who have tried it to date, with no elevation of blood sugar.  We talked for a bit, but he could tell I was getting tired so he said his farewells.

It was a few minutes later, while I was back to watching the Olympics that I got that feeling in my gut, yup, I was going to puke. I had just snacked on a banana about 20 minutes earlier. Headed to the bathroom and sure enough, up came some of my banana. My stomach was still feeling queasy, so I grabbed the bathroom trash can and went back out to the sofa as kneeling on the bathroom floor waiting for my stomach to do its thing is just not comfortable.

I heard Hubby answer his phone, sounded like he was talking to his mom while I continued to bring up small bits of banana slowly. Then shit got real. My whole gut started to hurt. And puking wasn’t just bringing up banana; it was trying to bring my toes up as well. Hubby came out of the bedroom and saw me bent over in pain with the puke trashcan in front of me. He texted the kids, no coming over today! I don’t know how you can have dry heaves with food still in your stomach, but I managed to do that a few times. The pain in my entire digestive tract continued to increase. I headed for the bathroom; this was going to get ugly.
I continued to intermittently bring up banana and Lemon/Honey tea between dry heaves. Then I felt the telltale urge to evacuate my bowels. This was diarrhea, and I am not talking watery poop with some solids mixed in, I am talking water pouring out my ass. And everything hurt to the point I felt like I could hardly breathe. Hubby had followed me into the bathroom while I was puking, asking if there was anything he could do. The pain was getting worse. He asked if I wanted water, more tea, anything. Ginger Ale, please. Once I had moved to sitting on the toilet, he exited. So he didn’t watch the horror that happened to me.

I was still puking into the trash can and water coming out the other end with the pain just getting worse. Then I was pouring sweat out of every pore in my body. I kicked off my pants and tossed them over by the bathtub. Then my underwear as I was just so damn hot and pouring sweat, but then another level of pain hit and I had to stop shedding clothes. I heaved so hard I thought I was going to pass out, I went light headed and was very dizzy. The pain just continued to increase and I thought for sure I was going to die right there shitting and puking.

I got through that wave of pain, but was so exhausted I could barely stay sitting on the toilet. I kept thinking, just wipe your ass and curl up on the bathmat. Then my body was on fire and I couldn’t do anything. I fell to the floor with everything hurting; my arms, legs and back on fire, a blazing pain and my gut screaming at me to get back on the toilet. I could not move. All I could think was any second Hubby is going to come back in and find me curled on the bathroom floor in so much pain I could barely breath with a dirty ass and half naked. He’s going to call 911 and this is how I will die.

I cried, and had snot coming out of my nose and pulled my pants over to wipe my nose, then used my wadded up pants to pillow my head. Hubby and gone outside to empty something, and I could hear him talking to someone, but I was in so much pain I could not even call out to him to come help me.

I am not sure how long I lay on the bathroom floor, alternately wishing to die and hoping the pain would end soon. Hubby came in and found me. He flushed the toilet, helped me wipe my ass, and tried to ask me what we should do. I didn’t want to move as everything still hurt, but it felt like it might be starting to go away. Hubby emptied the puke trash bag and put a new bag in the trash can for me. As the pain slowly receded to a horrible itching on my arms and legs we slowly put me back together so I wasn’t half naked. He helped me move to the chaise lounge so I could curl up, but not be stuck in the bedroom by myself.

At one point I felt like he was mad at me, and asked him why he was mad at me, I didn’t do this on purpose. I think it scared him and that was why he sounded angry. He calmed his tone after that, and was very attentive to me the rest of the day. He apologized for being outside for so long, even though it was probably less than 15 minutes. Our old next door neighbors drove up while he was outside and they visited for a bit. They had moved out towards Menifee almost two years ago. They were in the area visiting family and their son wanted to see their old house. Hubby explained what was going on with me and apologized that he could not invite them in for a visit, but today was a bad day.  That was an understatement…

I’m glad he got to visit with them. I’m kind of glad he wasn’t in the house to hear or see my fall from the toilet or hear me crying. It was bad enough to have to admit to him that I couldn’t clean myself up. I am sure if he had witnessed my fall from the toilet, 911 would have been called and I would have been hauled off half naked and covered in shit to the ER.

It took several hours, but I was able to drink all of an 8 oz. can of Ginger Ale and keep it down, even though my stomach protested every sip. I have graduated to Honey/Lemon tea again, and have managed to keep down most of a dry piece of toast. The diarrhea has subsided from all water to liquidy chunks. The fire that crept over my skin that turned to an extreme, painful itch has subsided to an occasional flare up of itch, but not the painful itch it was when it first went from painful prickly fire to itch. I think if I take some Benadryl it will knock out the itch. I will probably add the Benadryl to my night time pills.

Hubby made me promise I will tell Dr. Sikaria tomorrow about what happened today. Damn straight I will tell her! This is the closest I’ve come to thinking I would die or at least make an appearance in the ER. Today was ugly. The ugly part lasted a little over an hour, but that was an hour I was not sure I was going to survive. That scared me, a lot. If it scared me, I can just imagine how Hubby must have felt.

Life is glad today is over