We continue the dance with mom. She still continues to wean; very slowly. But other problems are arising. She has what's called anasarca (she's retaining A LOT of fluid.) They've started giving her some albumin which will hopefully help. The second issue is a potential infection. She's not having any fever and her white blood cell count is well within an acceptable level, but one indicator in her blood work was quite elevated (for you medical types: she had 34 bands...) They've taken samples of her blood, urine, and sputum and will check them for any 'bugs.' And they've started her on antibiotics just to be sure. She still remains in good spirits and donned her witches hat (complete with long stringy hair) as her Halloween costume today.
Her thoracic surgeon spoke to us today about her right lung. He said that he would like to try the talc procedure again. It would be not quite as big a deal, since she already has the chest tube he can just squirt the talc in through the tube. He thinks that since the lung has re-expanded that we may be able to take advantage of the improvement and that it may "take" this time. Mom's attitude is 'why not.' The tube is already there, so it's no big deal.
The count-down for my surgery is well underway. I've been working to get things done before I have to go in: paying bills, collecting all that I think I may need (knitting, reading, loading my iPod...), laundry, etc... It occurred to me that I absolutely had to make time to trim my toe nails! Sounds mundane enough, but if I don't get to it now it could be WEEKS before I can reach them! Little things like that just keep flooding my mind. I mean, I don't want to let it go or else I'd be able to climb trees with the things in a few weeks!
Tomorrow I go for a nuclear injection. Rose, Breast Cancer Coordinator extraordinaire, told me Monday that this won't be a normal injection into the vein. They will need to inject it directly into my breast so they can do a sentinel node biopsy. This checks to see if the cancer has spread to the lymph nodes. If it turns up positive, they will be able to see it during surgery and they will remove the nodes. Rose tells me that this burns when they inject it. I report for surgery at 6am on Friday. The surgery will start at 7:15 and will go for about 12 hours. After surgery, I will stay in the recovery room 24 to 48 hours. The nurses there are trained to spot early signs of clotting (which is a major risk of this surgery.) After that time, I'll be out of the woods and will be transferred to a regular hospital bed. I will have about 6 drains. I will also be "hunched" over for a while. It won't be pretty. It will be a little while until I can get my hands over my head so I won't even be able to wear the t-shirt my friend Lizzy Lou got me that reads "Keeping Them Real!"
Wednesday, October 31, 2007
Counting Down to Fire the Human Cannonball
Posted by Stephanie at 6:12 PM 2 comments
Tuesday, October 30, 2007
More News from the Center Ring
So much to tell... Mom's condition remains, for the most part, the same. They continued weaning yesterday (she was on CPAP most of the day- a lower level of support than she'd needed earlier in the week.) The plan today was to wean her off completely and, if she did well, remove the tube. They turned off the vent. Her respiration rate and oxygen saturation in her blood both stayed in a very acceptable range, but she indicated she felt like she was working very hard to breath. I think that since they had turned the vent down the day before, she had been working on deep breathing and she had just tuckered herself out. I may also just be wishful thinking... The doctor decided that it probably would not be best to remove the tube or take her off the vent. I stepped outside the room after he had examined her and asked about her lungs. The right side, the side they did the talc pleurodesis, is remaining free of fluid. But the only reason why it is clear of fluid is because she has a chest tube in. It is still putting out a lot of fluid and will likely continue to do so. The bad news is that the procedure to make the lung stick to the pleural space and hold it open didn't work. It is not something they can repeat, so we may need to go to Plan B. The option is to put in a small tunneled catheter into her pleural space. We can drain the fluid every few days which will give her relief and keep the fluid from building up.
The left side is another issue. They drained it late last week to give her more reserve. But despite them removing the fluid, the lung did not re-expand... at all. I looked at the chest X-ray from this morning and the lung is clearly "shriveled" up. Also the space is starting to refill with fluid. There isn't much they can do for this lung. But many people are able to function very well on just one lung.
They will continue to try to wean her, but if she is not able to do so by next Monday, mom may need to consider a tracheostomy. She has written notes to us that she still wants to fight. Her spirits are very good and she jokes and writes hilarious notes from time to time and has asked me to bring in Halloween candy for the staff. Now that she is getting the proper oxygen and nutrition, her humor has returned. She has said (written) that she wants to try the trach if need be. I am so glad she still wants to fight, but I wish I could be there over the next week because so many decisions (big ones) are going to be made. I have every confidence in Aunt Nell to help mom through this. The family has written and emailed and let me know how wonderful Nell is at caregiving (I was pretty aware already.)
So despite that I watch 'Dancing with the Stars' and still can't tell one dance from another, I'm getting pretty used to the dance we are doing here... Two steps forward; one step back... Two steps forward; one step back...
Posted by Stephanie at 7:33 PM 0 comments
Sunday, October 28, 2007
Planning for the Next Act
Mom was a little uncomfortable today, despite the nurse giving her shots for the pain. The chest tube is very tender, plus the muscles in her ribs are sore from doing all the deep breathing. So first, the bad news. Her lungs are not responding exactly as they had hoped. Despite them draining off over a liter of fluid from her left side yesterday, her lung is not reinflating as they wanted to see. Also, there is air in the pleural space. On the right side the air in the pleural space has diminished, but she is still having a large amount of fluid draining out of the chest tube. The fluid has been blood-tinged fluid up until today; it started to run clear (that's good!) The good news, they feel as though she may successfully wean off the vent, so tomorrow they will turn off the vent through the day. If she does well, they will remove the tube late in the day.
The doctor said she would probably still be in the hospital Friday. This has caused us both considerable distress. We both want her home when I have my surgery, for many reasons that I won't bore you with. But I told her today, we are probably both going to have to let it go. It will be hard for me to relinquish control (ie. be put under during surgery) when I know that she is so dependent right now. And she hates to still be in the hospital having to focus on her own care while I'm having my surgery. It will seriously limit our communication. And the worst part is that we won't be able to see each other for a week. That will be the most excruciating part. The anticipation is exhausting.
Posted by Stephanie at 8:36 PM 1 comments
Saturday, October 27, 2007
Today at the Circus
I know I should have posted an entry yesterday, but I was so tired when I got home last night. Mom was more awake yesterday which was encouraging. The doctor on the floor yesterday did a ventilator weaning trial in the morning. Mom lasted a little less than an hour, but then she became anxious and her respiration rate went up. They chose not to do anymore weaning yesterday. The doctor was pretty negative and told me that she would probably not wean off the vent. This kinda ticked me off, because he'd never seen mom prior to this hospitalization. The other doctors, the ones who have seen her before, all say that they believe she will come off the vent.
Her cousin Anne sent a care package with a Honey-Baked Ham, some pecan tarts, tea biscuits, pear preserves she'd made and cheese straws. Gary had called to let us know the package had arrived yesterday afternoon. I told mom what was in the package. She was pretty hungry at this point. But boy, when I mentioned cheese straws, she picked up her pad and pen and wrote, "I WANT CHEESE STRAWS!" I told her she needed to get the tube out so she could eat. She then wrote. "CHEEEEEESE STRAAAAAWWWWS!" This went on for about 15 minutes. (The only person who likes cheese straws more than me is my mother!) Needless-to-say, she is very motivated to get the tube out so she can have cheese straws.
Today Aunt Nell and I went to the hospital. Mom looked great. She's rehydrated and very alert; writing notes and joking. At 8am they turned down the rate on her vent to 8 (that means 8 breaths per minute.) She is consistently breathing over the vent, but they are concerned that she isn't taking in enough volume in air. See, her lungs have been compressed so long by the fluid that she's had very little volume, so she compensated by breathing faster. Now that they have drained some of the fluid, she can take in more air, but she has to retrain herself to do it. This morning they drained more fluid out of the left lung. They did this to give her a little extra reserve to help her wean. She did very well. After a few hours, she started to breathe much faster. I held her hand and told her to 'breathe in and out, nice and slow, nice deep breaths.' After about a minute, she was able to slow down her breathing on her own. This happened a second time and we were able to talk her down from a panic that time as well. Every hour or so, we worked on taking nice deep breaths to get those muscles around her ribs used to working again. By the end of the day, they lowered the rate on the ventilator down to 4. She continued to breath on her own over the vent very well. She just did so fabulously today! It will probably take a few days to wean her and get the tube out, mostly because she needs to work on taking a bigger volume of air, but she is very determined to get that tube out and get home.
Her nurse today was Bob. He was just fantastic! He knew just how to 'handle' her. Her cousin had included a pink cowgirl hat in the goodies she sent. Mom insisted on wearing it all day. Bob called it her 'party hat' and said she could wear it only if he was invited to the party. She teased him, but wrote a note to me that said "great nurse!" I agree.
She got a call from Sandra today (see earlier blog entry's.) She had called my cell phone to see how mom was doing and I called and gave her the number of the phone in the room. Mom had been asking about her the previous day, so I thought it would be good for mom to hear her voice. I held the phone to mom's ear while Sandra spoke. Mom was able to mouth or write words for me to say back to Sandra.
We are back again tomorrow. When we left tonight, I gave mom homework. I told her that while she's awake I wanted her to do breathing exercises for at least 5 minutes every hour... Nice deep breaths to work those muscles. You know she will. She's pretty feisty!
Posted by Stephanie at 7:54 PM 0 comments
Thursday, October 25, 2007
A New Day
First, thanks to all for your calls and emails in response to mom's set-back. I can't thank you enough for all of your care and concern. Aunt Nell and I spent the day in the ICU with mom. When I arrived, she was very anxious, but alert. I explained what had happened and held her hand a while. She seemed to calm down. She dozed on and off today. The good news is that they were able to turn off the IV medicine that they had to give her to keep her blood pressure high enough. They also were able to turn off the sedation medicine as well. Mom was very alert this afternoon. She was able to jot down some notes to answer and ask questions. She wanted to know about all the tubes, what they were for, why she had them, how long they would stay. I spent quite a bit of time explaining everything to her and the plan for her care. It was a real moment for me. I've taken care of so many patients in the past and have explained what I was doing to them and gave a brief overview of what was going on. But I really saw a change in mom after I explained what had happened, what all the equipment was for, what to expect with buzzes, beeps and bleeps. Her humor is still intact, even in the midst of this. Her chest x-ray today looked much better than yesterday's. Her right lung is reinflating which is very good. The thoracic surgeon feels very encouraged by her progress.
They tried to wean her off the ventilator today. This morning she tolerated a little less than an hour before she became very tired and she began breathing very fast. The thoracic surgeon and mom's nurse thought this was good. The doctor in the ICU and the respiratory therapist were not as encouraged. They feel she should have lasted longer. My personal opinion: the surgeon knew mom's condition prior to her hospitalization. She was/is so debilitated, he sees this as a great improvement. I feel the same way. I think that even though it was only an hour, she seems so much clearer than she's been in a long time because she is receiving all the oxygen she needs. It may take a little while longer for her to wean, but I think she'll do it!
Posted by Stephanie at 9:10 PM 0 comments
Wednesday, October 24, 2007
Rough Days
The last two days have definitely been a mixed bag. First, the good news. I received a call yesterday from the genetics counselor who told me that I tested negative for the the BRCA1 and BRCA2 genes. Great news! This doesn't mean that my cancer doesn't have a genetic link, it just means that if it genetic, they have yet to discover the gene that is responsible for the breast cancer in my family. This in no way changes my treatment decision of a double mastectomy. I am forging ahead with that. It does mean that I won't need to have my ovaries removed.
This past weekend several of mom's cousins rented a few houses in town and had a get together here in North Beach so they could see and spend some time with her. My mom's Aunt Nell and Aunt Doris also came. It was so good to see family and although it really took it out of mom, she loved catching up with everyone. Aunt Nell is a retired nurse and worked her entire career as a nurse. As she told us early on, she doesn't have much, but she has wheels and time so we had arranged for her to come take care of mom while I was in the hospital recovering. On Sunday before the group left, Aunt Nell pulled me aside and told me that since she was returning in 10 days to help care from mom, she was offering to stay and help us out. I felt as though the clouds had parted, the sun shone through, and she (the angel) emerged. Mom, Gary and I whole-heartedly welcomed her help, even early!!
So I had my pre-op appointment yesterday morning. All systems go and countdown has begun. Towards the end of my appointment, I received a call from Gary. He and Aunt Nell had taken my mom to have a CT and bone scan. I was concerned that she would have a lot of difficulty getting the contrast down, but she actually did better than any of us expected. They had to lay mom flat to do the CT and because her lungs were pretty full, she had quite a bit of difficulty breathing. Gary was by her side the entire time and helped her work through it (that and bumping her oxygen to 8 liters!) He called me to let me know and we decided that she needed to go the ER.
It ended up being a wise choice. Her right lung was nearly completely full and the lower 2 of her 3 lobes were completely deflated. The pulmonologist who saw her in the ER felt that even though she was scheduled the next day to have the fluid drained, it was such a dire situation that he recommended to drain at least some of the fluid off. So he drained about 3/4 of a liter of fluid off. She was much more comfortable, but was still dehydrated. By this time is was 8pm and we'd been in the ER since about 11:30. We had been told they were going to admit mom to the hospital, but the ER doctor came in to tell us that the oncologist covering for mom's doctor was NOT going to admit her. Never-mind she was incredibly weak, hadn't had anything to eat all day, and had not gotten any IV fluids either. So here is was 8pm, by the time they get us discharged it will be 9pm (if we're lucky) and by the time we get home it would be close to 10pm. AND mom's not supposed to have anything to eat after midnight and we have to be up at 4am to get her back in time for the procedure. I explained all this ad nauseum to the ER doctor who was NOT happy the doctor wasn't going to admit her. So we got her home around 10. She was so pooped that we set her up to sleep on the couch; she just couldn't tolerate going up the stairs. We paged the surgeon who was going to drain her lung and do the procedure to keep her lung from filling again. The last information he had was that she was being admitted, so we wanted to let him know that the plan had reverted back to her coming in as an outpatient. We didn't request a call back, but he called us back almost immediately. Needless to say, he was pretty ticked off they hadn't admitted her. He told us that we wouldn't need to have her there at 6am, but to come around 7:30.
She slept very well (we have a comfy couch.) We arrived with plenty of time to spare and they let us wait with her before they took her back. The plan was to draw any remaining fluid off the right lung and insert the talc to help hold the lung to the pleural lining.They were able to finish in about an hour, but when they finished, her lung did not re-expand the way they expected. The drew off an additional liter from the right lung. After the procedure, her oxygen levels in her blood dropped very low and very rapidly. They put an oxygen mask on her. When that didn't work, they put in what can best be described in layman's terms is a breathing tube "lite" (or a LMA tube for you medical types.) They planned to let her lung reinflate and removed the tube. Again, things didn't workout as planned. She had some more distress and they had to intubate her and put her on a ventilator. Her blood pressure dropped very low also. All of this was in the recovery room. They asked Gary and I to come back and then they put us in a little room for the doctor to come talk to us. At this point I got a little nervous. When he came in, he explained what was going on and asked what her wishes were in regards to life support. Wait. WHAT??? Talk about a direct hit at the water line. We totally weren't expecting that. We had to give him an answer right then and there. Mom and I have talked about it, but she just had the procedure done and I felt we needed to give her body a chance to heal itself. Because of her debilitated state, it is going to take more time to heal. We were able to spend a little time with mom, but they were putting in a central line (a "major" IV) pretty quickly, so we couldn't visit very long. She did squeeze my hand and responded to my questions so that was a little encouraging. One of the doctors showed us her chest x-ray. You didn't have to have medical training to truly recognize the extent of her pnuemothorax.
After we left the recovery area, it really started to hit me. Gary and I were able to further discuss her wishes for her code status. We decided to ask the doctor to make her a "chemical code." This means that if her heart beats erratically they can use drugs to try to correct it, but we don't want them to do compressions if her heart stops. She is so frail and weak that it would do much more harm than good.
It was a rough afternoon, but they got her into the ICU around 2:30. They had been able to stabilize her blood pressure and her blood oxygenation was doing well also. We were allowed to see her around 3pm. She was still responding to me; squeezing my hand. She snoozed for a time while we gave the nurse information. One of the chaplains came by and we spoke for a while. She is also a music therapist. She had her harp in tow and came into mom's room and played a while. It was really nice! After she left, mom woke up. I asked her if her backside hurt and she indicated yes. They were able to turn her and gave her some pain medication. She was much more comfortable. I explained what had happened to her and what the plan was. She was very lucid and was able to nod responses to 'yes' and 'no' questions.
She will stay in the ICU for a few days. The hope is that her lung will slowly re-inflate and she'll be able to ween off the ventilator. Time will tell.
I'm certain I've rambled away with this entry. I'm pretty exhausted and it has taken me two hours to get this done. Pardon any grammatical, spelling, or math errors... I'll try to keep the blog up-to-date so you can all be kept appraised of changes or improvements.
Posted by Stephanie at 6:25 PM 0 comments
Sunday, October 21, 2007
Follow-up and Answers to Other Questions
I have several questions about previous postings, so I figured I'd respond because you may all be asking the same thing.
First, a report on the pup that wandered up last month. After two near-successful attempts, we've not been able to adopt out Lola, the rottie that "found" us. We keep saying there is no way we can have 3 dogs, but after a month with us, she has inched her way into our household and our hearts. She has graduated from a rope as a leash to a full blown collar and leash of her own. She has her own bandana now (like the other girls), and she even has moved from a stainless steel mixing bowl to her very own dish. She's getting along just fine with the other dogs and Hudson, who usually wants nothing to do with strange dogs, is tolerating her very well, thank you. She has the sweetest disposition and we have just fallen in love with her. So Lola is officially off the market.
Mom has had a bit of difficulty lately. Mostly because her lungs have filled back up with fluid. We are looking forward to having the procedure done this week that should help things. Despite her fatigue, she is making wonderful progress. I've been taking photos of her wound. I've cropped these to show just under her arm where she had many small tumors. As you can see the second picture (taken today) the tumors are gone! This has happened in just under 4 weeks!! She still has a very long way to go, but progress is progress.
Life these days is all about improvising and adapting. When we ordered the Enercel (the homeopathic) we knew it would be given IV, but the thought never occurred to me how we were going to hang the stuff until the day it arrived. So this is what we came up with. Yes. That is a whisk! And no, we've not had scrambled eggs since mom started the Enercel. Hey, whatever works, ya know?
We've been told by so many that they are praying for us. Mom has a hard time keeping it straight because there are just so many. So, someone suggested we get a map. It took me forever to find just the right kind. A regular road map was too big for the wall, so I looked for a children's map. I looked everywhere, but no luck. Finally, I went into a local toy store. They said they didn't have any maps, but as I was walking out, the clerk said, "We have a placemat with all the states." It was perfect. You can see here what I've done so mom can see it from across the room. She loves it and it is SO impressive.
Many of you have been asking for our address. Here is the information:
PO Box 824
North Beach, MD 20714
Keep your emails and calls coming. We look forward to every single one!
Posted by Stephanie at 2:57 PM 1 comments
Wednesday, October 17, 2007
Ch-ch-changes...
Yet more changes.
I got another call from the breast cancer coordinator today. They have moved my surgery back to the original date of November 2nd. It's good that the surgery will be sooner, but I'm becoming aware that maybe I'm not as adept to change as I thought. When she told me, I felt like I'd had the rug pulled out from under me, again. I'd called everyone who was coming to help out and reschedule them, plus I'd mentally and emotionally reset myself for the new date. You'd think it would be easy to have the date pushed up to the original, but it really took me aback.
So things will work out. I'll be happier to get this done and over with. But I'm a bit emotionally exhausted from all of this.
Patience, patience, patience.
Posted by Stephanie at 8:23 PM 2 comments
Monday, October 15, 2007
Falling Off the Wire Without a Net
I get a call first thing this morning scheduling my pre-op appointment to go have all of the preliminary blood work and other tests for the surgery. It was the last thing that needed to be scheduled, so once I received the call I felt things were all in place. I had set all the arrangements for friends and family to come take care of mom while I was in the hospital, and both of us once I was at home. Shortly after getting the appointment details, I received a call from the Breast Cancer Coordinator needing to reschedule my surgery. As she spoke the words, I knew what was about to follow. I'll interject to say that even though I knew what was coming (my surgery was being pushed back) I was thinking mere nanoseconds before she uttered the news, 'maybe she's calling me to push the date up.' Hope is such a strange, confused thing sometimes...
So I felt like someone had grabbed my ankles and up-ended me over the side of a ship and now I'm bobbing in the ocean, flummoxed as to why it happened as the ship sails away. Okay, a little over-dramatic, I grant you, but here's the upshot. My surgery is pushed back a full 3 weeks; that's not the worst of it. It is scheduled a day before Thanksgiving. This involves so many more people than just me. I've coordinated 5 individuals to come and Gary has worked diligently to coordinate his schedule. We're now going to have to start from scratch.
'So why?' you ask. Well, I was told there is a woman who was diagnosed about the same time as I was, but she has invasive cancer. Due to reasons they didn't go into, she was not able to get her surgery earlier. Because she has invasive surgery, her case is much more urgent than mine. Dr. Rodriguez, the plastic surgeon, is in very high demand... he is after all, the best! So they need to do it sooner. Sadly, I got bumped. It sounds harsh, but I'm completely empathetic for this woman. I know if I were in her position, everyday I waited would be a shear eternity of agony. Just knowing that the cancer could be breaking free and circulating in my body would be a little more than I could bare. My cancer is non-invasive and is still confined to the duct. While I want it out as soon as possible, I'm not in her position.
Patience, damn it. Patience!!
Posted by Stephanie at 6:28 PM 0 comments
Friday, October 12, 2007
The Signs say "YES"
Isn't it strange that when you open yourself up to it, the Universe seems to send messages loud and clear to help you along your path? For me lately, it has been more about affirmation. I'm aware that some of my friends think my decision to have a double mastectomy is an overreaction on my part. I don't feel the need to defend my decision because I know what I've put into making it and the treatment is something that works for me. I've been told time and time again that this is a very individual choice. I'm certain that 10 women would come to differing decisions based on completely different motives. But I have tried to put myself in my friend's shoes to see it from their perspectives and I suppose I can see how people could think that I'm overreacting. But they've not walked any distance in my shoes.
I've just finished a great little book that The Martini Princesses in Charleston sent to me. It's called "The Victoria's Secret Catalog Never Stops Coming and Other Lesson's I Learned from Breast Cancer" by Jennie Nash. It is a very quick read and I highly recommend it to anyone. As I was reading I felt as though I could have written much of it. Her story completely affirmed the decision I've made to have a mastectomy.
Last week, my "old" friend Fish emailed me an article in Time about breast cancer. Of course, you know it (breast cancer) is all over the news right now since it is Breast Cancer Awareness Month. I read through the article which was very well written. A researcher at University of Michigan stated that women with early stage breast cancer go from diagnosis to surgery in about 2 weeks. Most choose less invasive lumpectomy but at least one-third of them are eventually unhappy with the decision. At least 50% of women didn't feel fully involved in the decision making process about their treatment. The kicker is that the more involved a women is in the decision of her treatment, the more likely she will choose mastectomy! By the time I have the mastectomy, it will have been two and a half months. I'm not sure what the average time to treatment is at University of Maryland, (where I'm being treated) but I think that having the time to fully consider ALL of my options, research information online, talk to other women and families who've dealt with breast cancer, and get a second opinion has been beyond helpful. I'm not sure if what Fish intended when he sent me the article, but it was certainly an affirmation for me.
Now I'm not going to sit hear and type that I'm not scared. My entire life (besides when I was a newborn) I've only been in the hospital overnight once, and that's when I was 5 and somehow got dehydrated. So being put under for 12 hours gives me the willies, not to mention spending 5 to 7 days in the hospital! Nevertheless, I am not deterred. All the signs the Universe is sending are saying ' Go for it!'
Posted by Stephanie at 5:13 PM 1 comments
Wednesday, October 10, 2007
Hero of the Bigtop
Not enough has been said or written about the biggest hero of this entire ordeal... my husband Gary. This is a man who spends his nights in the ER saving lives; or as he jokingly says when he heads off to work, "I'm going to stamp out lives and save disease." Otherwise he'd put himself out of a job. There isn't much rest for the weary these days as he comes home to take care of my mom and me. This man has tirelessly cooked, cleaned, and run errands well above the call of duty. And all without a single complaint. He also has provided compassionate and loving care to his mother-in-law. He fixes her whatever meal she requests, empties her bedside commode, and patiently helps her up and down the stairs.
He has been dealt a seriously crappy hand. A wife about to undergo major surgery and a nearly bedridden mother-in-law. I try to tell him thank you regularly, but it just doesn't seem enough. My gratitude goes so deeply, words are just a bit lame. How in the world did I get so lucky?
Posted by Stephanie at 6:52 PM 1 comments
Saturday, October 6, 2007
More of the Dog and Pony Show
When I think back about all that has happened over the last week, my head begins to spin. We've had a lot going on. On Tuesday, we received the Enercel, the homeopathic that will supercharge mom's immune system. We gave her the first dose Tuesday evening. At lunch Wednesday, mom called out to me. I was working on a very important report for work and was "in the zone." You know, one of those rare times where you find your groove and the juices are really flowing. I hated to set down my computer because I was worried that once the spell was broken I wouldn't be able to get back into it. But I raced upstairs because she rarely calls out. "What?" I asked with more than a little concern. "I'm famished!" I've not heard her utter these words in years! I took her lunch order and prepared it as quickly as I could. She decimated everything that was on her plate. Through the week, the appetite has remained quite good. This being one of the "side effects" of the Enercel. She also says she is starting to feel a little better; stronger. But we haven't yet seen any boost in energy, but she just looks better.
On Wednesday, Sandra (her best friend for over 50 years) arrived from Texas to help take care of her (and me and Gary, too.) I was a little worried at first because any time that Sandra has come in the past, all they do is lay around, tell old stories and howl and cackle with laughter. I knew that with mom's diminished lung capacity, any lengthy conversation or laughter would completely exhaust her. But Sandra is a wise, caring soul. She has know exactly when to curtail any activity to give mom her rest. I think the visit is doing mom a world of good. And never mind all that she has done for Gary and me. She got to cleaning on Friday; something that we've just not had time for. The house is now sparkling clean. I've promised everyone that if I need help in anyway, I'll ask. But asking anyone to clean my house is just something I'm not capable of. I can never express the depths of my gratitude to her for doing this!
Thursday morning I was doing the daily dressing change for mom. When I removed the old dressing, I could barely believe my eyes. Mom's wound seemed to make a drastic improvement over night. The wound didn't look as "angry" as it had before. It seemed as though the tumors had slightly shrunk (one at her armpit was nearly completely gone!) The skin looked as though it was healing. The Femera is supposed to shrink the tumors, but we'd seen no improvement whatsoever until we started the Enercel. The thing that struck me the most was that her skin around her torso, once very rough and hard, was soft, supple and not discolored anymore. I am completely amazed!
I took Friday off from work. Three girlfriends from across the country came to North Beach to "love and support me." Our little group is called the "Loser's." We've come to know each other over the last 15 years through singing and touring. Diva's everyone, the name is derived from the fact that everyone is an amazingly talented singer, yet not one has a recording contract. So when we get together we have every bit the diva attitude with names to match. Several years ago, on one of our yearly gatherings, we came up with pseudonyms. We are: Bebe Barbosa, Foxy McMahon, Trouble Papanopolis, and me, KiKi del Fuego. Believe me, the names fit!!
Last night, we had a birthday party for mom. Her birthday is Tuesday. Gary made a wonderful Caribbean feast, we had presents, cake and ice cream. She loved it! She was beaming as we all sang 'Happy Birthday.' We blew out her candles for her as a group. Thank God someone had the foresight to not let her do it. Oxygen and fire don't make the best combination...
Posted by Stephanie at 9:11 AM 2 comments
Monday, October 1, 2007
Another Outing...
Another appointment day for mom. She had to get an infusion to help correct her calcium. Since she has some possible cancer spots on her bones, the calcium is shifting from her bone into her blood so her blood levels of calcium are higher. Her doctor ordered once a month injections that will help the calcium move back into the bone. Getting comfortable has been a frequent problem for her; she's just got no meat on her bones! But we had some bright spots today. She said the infusion chair was very comfortable. (Bonus! Can we get one at home?) And when I told her that her Medicare kicked in today, she squealed with glee. It was very cute. She said she was feeling stronger than she'd felt in a while. It was, of course, Chik-fil-A day. On the way home I asked if she was up to stopping by a pumpkin patch to get pumpkins and mums. She loves the white Cinderella Pumpkins. Although she stayed in the car, it was a beautiful afternoon and she enjoyed watching me walk around picking just the right one. I found one that looked just like Cinderella's carriage (after midnight, of course!)
She was fatigued when we got home, but insisted that she get up the stairs on her own volition. She said that she is angry and frustrated today at her infirmity. She wants to have more energy. I think this expression is a good one. It illustrates that she wants to fight! I like that!! After resting a while, she stood up and with Gary's help walked to the stairs. I tended her "leash" as we call it (her oxygen tubing.) I'm usually helping her so I was struck by all of the activity in the rear. The three dogs were following her up the stairs matching her slow pace, not falling one step behind. There was barely enough room for me! Gary called them the pace team. They were all so concerned and looked like they would catch her if she missed just one step. Good helper dogs!
Posted by Stephanie at 5:55 PM 0 comments