In the Clear!!!

Mom had her yearly mammogram this morning. She just called me with the results. She had a good test and they didn't see anything abnormal!! I was holding my breath all morning waiting to hear this news. Getting through this test is a huge next step in the healing process. It was exactly a year ago that we didn't get the good news. WOW, a year! We've gone through and survived so much!

Mom was also asked to be in a focus group for cancer patients at the Moll Center in January. This is perfect for her. If information about what she went through can help another person who is just starting the battle, then this is one of the most important things that she can take part in.

Go Pauline!!!

Happy Birthday Pauline!!!

Today is Pauline's 70th birthday! What a year it has been! It is one that I do not want to repeat! Here's hoping her 70th year is so much better than her 69th year!!

Happy Birthday to you!
Happy Birthday to you!
Happy Birthday DEAR PAULINE!!!!
Happy Birthday to you!!

Happy Thanksgiving!

Happy Thanksgiving! I have so many things to be thankful every year, but even more this year. I am so thankful for my family and for my friends. This is the time of year to reflect and share those thanks. We will be joining the Beutel family for our usual large family celebration later this afternoon. There will be 24 family and friends celebrating Thanksgiving at my cousin's house this year. Aunt Marilyn is determined to make it this year. As a update, Aunt Marilyn came home from the rehab center a month ago. It is good news that she is home and rehabilitating there. Mom has been stopping by to help in things around the apartment.

Of course, the main thing that I'm thankful for this year is that my mom has been so strong and is a breast cancer survivor. The beginning of the year was so unknown and scary. We had no idea what was going to happen, but thanks to the great care of the doctors, nurses and social workers at the Moll Center, the time went by much quicker than we thought it would. Mom handled things so well, I am and will always be so proud of her. She is now in survivor mode. She has her up and down days, but that is going to happen. The good days are out numbering the bad days. Now, Mom is trying to figure out what to do now that she doesn't have to focus on her health as much. She has been helping out Aunt Marilyn and her dear neighbor, Betty as Betty recovers from hip surgery. Mom is putting the word out that she is looking for something to do part-time, either helping someone out or answering phones or what not. This is a big big step, because Mom has been out of work for 2 years now and wanting to get out to do this is HUGE! Another thing to be thankful for, that is for sure!!

Happy Thanksgiving!!!

It's been awhile

I know, I know...it's been awhile since I have sent any updates. But, no news is good news, right? I am just getting back into the regular routine after being part of the organizing committee for my 25th high school reunion, which was last weekend. Things were really hectic for me since the last time that I posted.

First, an update on how Aunt Marilyn is doing. She bounced back from her stay in the hospital, yet again. She is now back in the rehabilitation center working on getting her broken arm to heal and to regain her strength. She is doing rehab exercises everyday, in fact she really looks forward to doing that. She is having issues with eating and digesting what she eats. She needs to eat in order to have energy to do her rehab. So, this is a constant battle. She vows to be back to her apartment. Let's all hope that she can be.

Mom is plugging along. She has her good days and she has her bad days. But, that is usual. The good days are out-weighing the bad days now. Her hair is coming back in quite nicely. It is actually a bit darker brown than it was before she lost it mixed in with gray and white. It looks like the curls came back too. She is now going out without a hat on. She is comfortable in herself and that is most important. She is still going to classes at The Gathering Place and The Moll Center at Fairview Hospital. I really think that the support groups are a godsend for her. Now that the drug situation has been resolved, the next thing is getting her payments (that weren't covered by insurance) set up with The Cleveland Clinic. This has been a back and forth process since May. She sent her financial information to two different people, who then lost the information and her files. Then, she set up a face-to-face meeting with someone at the Moll Center and she is still waiting for the outcome of that meeting. In the meantime, she was told not to pay the bills she is receiving until everything is set. She has another meeting tomorrow morning with the billing/finance person. I hope that this gets sorted for her soon. That is the one last thing that she needs to worry about right now.

I wanted to comment about an insight that I had from the reunion weekend. So many people that are my age are touched by cancer in some way. For me it has been through friends (Barra and Andi) and obviously my mom. But, I found out that one classmate is a 4 year survivor who had a double mastectomy. Other classmates are helping their parents through treatment right now. This horrible disease affects every one of us. I always knew that, but talking to classmates brought that realization home for me. It is definitely an eye opener.

Aunt Marilyn

Aunt Marilyn is back in the hospital. She fell Wednesday after turning off a light in her room and broke a few bones in her upper right arm. We didn't know that this happened until late Thursday, when my uncle called family. They can't do surgery to re-set the bones as Aunt Marilyn is really too weak. (She hasn't really fully recovered from her trip to the hospital in February of the year) Aunt Marilyn was in intensive care through the weekend because she was having difficulties breathing. She has recently been moved to a step down room. She is having issues with too much carbon dioxide in her system making her hallucinate. I'm getting the news second hand from my mom. I've been battling a cold for the past 2 weeks. I don't think that going to a hospital is the best thing for me or for the patients, so I'm waiting to see Aunt Marilyn. I'm sure that she will be going back to the Normandy for rehab. We'll just be waiting to see what happens. More info to come.

Race for the Cure

Yesterday was the Susan G. Komen Race for the Cure in Cleveland. It is always a huge event and yesterday's event was the same. There was an estimate of 25,000 participants in the run and walk yesterday! It was a sea of white and pink t-shirts everywhere. This was my second time doing the walk. I walked in it in support of my friend, Barra Terrigno and her team, Barra's Backers, in 2008. Barra was in the middle of her chemotherapy and she did the entire walk. Doing the walk was emotional for me, but it felt so good to be there. I was amazed at the turnout of 20,000 people, even in the rain. I knew that I would do what I could to be in future walks in support of Barra. I didn't expect to be doing the walk in support of my Mom.

It turned out to be a gorgeous day for the walk. You can tell the excitement and emotion of event just walking in the crowd of the participants before the run/walk. Our team, Pauline's Posse, met in a great location at the start of the race. We could see all the activity going on. The team was 19 members strong-from long time friends, to family to co-workers of my dad's. I got flower leis for Mom, Dad, Sue and I and the rest of the team got pink leis. We were all getting excited for the race/walk. As we were lining up, we saw the mayor of Cleveland, Frank Jackson. Mom will talk to every and anyone. She went up to the mayor to say hello and they had a little chat!

The race started and of course the team got separated. Everyone was walking at their own pace. I walked with mom, so we walked slower. Her goal was to get to Tower City, which was about a mile from the starting line. She got there and decided to stop. We thought that there was a trolley to take people between Tower City and the starting point of the race. However, the trolley didn't show up and Mom had to walk back to the Wolstein Center to meet up with the rest of the team. She nearly walked the amount of the entire walk by walking back and forth! She probably could have walked it with us. But, that is okay. I'm proud of how far she walked. She has come so far in the past 9 months. There was a big group of people that got ahead of the pack. I stayed back and walked at a leisurely pace with Jen and Larry. Then, we all met up at the end of the race. Some of us went out to lunch and enjoyed the wonderful weather. It was a great way to end a really nice morning. Mom mentioned this evening that she has been to 3 breast cancer events in the past 3 months-a retreat with That Gathering Place, cheering on the walkers in the 3-Day Walk and then participating in the Race for the Cure. It has definitely been a big 3 months for her.

Thanks to everyone for supporting Pauline's Posse and thanks to the members of the team who walked yesterday!

Race for the Cure is Tomorrow

Tomorrow morning is the Susan G. Komen Race for the Cure.. Mom has been in training for a good portion of the summer. I'm so proud of her. It is going to be a very emotion- filled morning on many levels. I just watched a pre-race special and I was starting to get teary eyed, so tomorrow will be even more emotional. Mom decided not to participate in the survivor's ceremony. But next year she will.

We have 19 people on our team-family members and friends. Thank you in advance for all of your support through the past 9 months! And thanks to those who have donated to help end this disease!

Pictures to come!

Follow Up Visits

Last week, Mom had follow up appointments with her surgeon, Dr. Pratt and her oncologist, Dr. Bagai. The first appointment, last Tuesday, was the 6 month follow up for her surgery. Dr. Pratt said that everything was looking good. Mom had good mobility in her left arm and everything had healed nicely. Mom told the doctor that she was walking in the Race for the Cure. Dr. Pratt was very proud of her for doing that! Mom will have her yearly mammogram in December and then her next appointment with Dr. Pratt is in a year! That is a great milestone!

The next follow-up was on Friday with Dr. Bagai. I went to the visit with her. It was the usual routine of blood work and then doctor's visit. It was strange to be in the office so near to the chemo lab where we spent alot of time in the winter. Mom had a bone scan the previous week to see how her bones have been affected by taking the hormone drug, Arimidex. (generic version)The bone scan looked okay to the doctor. But, he did recommend mom taking more Vitamin D and Calcium. I told the doctor mom's list of side effects from the Arimidex. Mom has been having some circulation issues in her toes that could be both due to chemotherapy and her diabetes. Dr. Bagai recommended to take Vitamin B6 to help with that. He also said that some of her other side effects (nausea, bone and joint pain, hot flashes and loss of appetite) will subside as her body gets used to the drug. That is good news. Mom also told Dr. Bagai that she was walking in the Race for the Cure. He was very impressed with her doing that and encouraged her to keep up the walking! Her next appointment with Dr. Bagai is in 6 months. (another milestone)

It is really hard to believe that 9 months ago we were getting her set to have her mastectomy and whatever came along with that surgery. What a year it has been! Now, we are getting her ready to do her first (hopefully of many) Race for the Cure Walk!

It's been awhile

I know, it's been awhile since I have written anything. But, thankfully, not much is going on with mom. She is slowly recovering and gaining back her strength. She is still getting used to the Arimidex and it's generic, Anastrazole. After a month of not knowing if she would be able to get the lower cost on the generic version, Diplomat came through with a cost of $7.00 a month for the generic. That is a life saver as the other pharmacies that she checked had the drug ranging from $70.00 a month to $370.00 a month! We are hoping that this price sticks and she won't have to worry about the cost going forward.

Mom is going for follow up visits for Dr. Pratt, her surgeon and Dr Bagai, the oncologist this week. Mom had a bone scan last week. This was to check her bone density as one of the side effects of anastrazole is bone density loss. I'll be going to the appointment with Dr. Bagai on Friday.

The Race for The Cure Walk is in 13 days. Mom has been in training doing alot more walking than she has done in the past 5 years. It is so great to see her so enthused to do the walk. I know that the day of the walk will be emotional, but so worth it. Right now, we have 11 team members and this could grow before the actual day of the walk. I'm very proud to say that we have surpassed the goal that I set for the team!! Mom has been out there getting donations from friends and family! Go Pauline's Posse!

3 Generations

I just love this picture. Brynn got her haircut for the first time last week at Alto Capelli Salon. Sue, Mom and I have been getting our haircut by Stephanie for 20 years. Sue and Steph have been friends since Junior High School. Anyways, Mom went to watch Brynn getting her haircut and took pictures as well. She handed the camera to Stephanie to take this wonderful picture of Sue, Brynn and Mom. Mom's hair is coming back (and those of you taking bets on the grey or white will win!) and she is feeling more confident not wearing her hats out to places where she feels comfortable.

Mom is still dealing with the insurance companies and drug companies, but that will be updated for another blog posting.

More Photos from the Cheering Section

Pauline was in her element cheering on the walkers of the 3-Day Susan G. Komen race last Saturday morning. We stood next to a couple from Chicago. The gentleman in the dress is a 60mile man. He was even in a calendar that Susan G. Komen put out for men you walk these walks. He and his wife have been walking in these walks for years for her grandmother who is a 36 year survivor. He usually walks in some sort of costume from Wonder Woman to Lady Gaga. He chose a lovely pink number to be a cheerleader for the Cleveland race. His wife shaved her head in support of her best friend who was recently diagnosed with breast cancer. Just watching the looks that he received from the walkers was the best. Pauline loved him! :-) It was great seeing Pauline so enthusiastic!

Cheering on Amy during the 3-Day Walk

Just the picture today. Waiting to get mom's camera to download a few more from the cheering section. 6 weeks until Race for the Cure 5K walk!

Cheering for Walkers

Mom and I were part of the cheering section for walkers in the 3 Day 60 mile Susan G. Komen walk Saturday morning. A participant in the walk, Amy Miller Crandall, and I went to high school together and reconnected on facebook a few years ago. She lost her mother to breast cancer and is doing everything that she can to prevent that from happening to other people. She said that she would add Pauline's name to the list of people that she is walking for. So, mom and I went to see her at one of the cheering section to give her big hugs and lots of encouragement. We were cheering for all of the walkers as they went by us. We met a couple who are part of the staff and they around to all of the walks and cheer, help or walk themselves. The husband was a hoot. I will post pictures after I get them off of Mom's camera. Mom just seemed to really enjoy herself in this situation. She was cheering walkers on, talking to people. She was in her element! I was so proud!

Happy 46th Anniversary Herb and Pauline!

WOW! My parents have been married for 46 years. In just a few hours, Sue and I will take them out to dinner to celebrate this special day. It is something that we will celebrate even more after everything that we have been through in the past 8 months. It's been a trying year, but Mom and Dad have made it through it together!

Mom continues on her road to recovery. Her hair is beginning to come back. Did you take bets which color it would come back as? She is walking a bit every day to help build up her energy. She is in training for the 5K Susan G Komen Race for the Cure. I know that with all of the support of the team members, she will do it. And speaking of team members for Pauline's Posse, the team is growing! Thank you! Also, thanks to everyone who has donated so far!!

Mom is still battling the insurance companies about the generic brand for Arimidex and now she received word that her insurance company wasn't going to cover the Onctotype DX test that was performed on her tumor after her mastectomy! The insurance company "lost" the paperwork that was sent by her surgeon and her oncologist! So, now Mom will be going through appeal one for this test. The test without the insurance is $4,500!!! With her insurance covering it, the cost to mom is $75.00. It is just incredible that nearly 7 months after the surgery and completing the treatment, the test was not covered? I wonder if this happens to every patient like my mom? Now it is waiting to hear back from the insurance company. Next is the battle for a lower cost on the Arimidex generic. It is never ending......

The Runaround

Mom is still in the middle of the "runaround" with her Arimidex prescription. She received her monthly supply from Diplomat late last week. Instead of it being the generic that she thought it would be, she received the Arimidex again. This is just more and more confusing. The "generic" that she recieved from the regular pharmacy, anastrozole,is the same thing as the arimidex. I believe that the one is the active ingredient of the other. If I'm confused and my mom is confused, can you imagine how people who don't really pay attention to the costs and the drugs are fairing? Mom went to her pharmacy for other prescriptions today and checked on the cost of the arimidex "generic" and it was now up to $377.00 for a 30 day supply! Now that is just a bit over $130 less than what it would cost for the regular drug. Not much of a savings yet is it?

Other than having to deal with all of this craziness, Mom has been having many more good days than bad days. Yesterday, wasn't a good day for mom as she was suffering from lots of nausea from the Arimidex. However, she is feeling much better today. This must come in waves for her. Once her body gets used to the drug, then she can get her other medications under control. Slow progress, but the prospects are looking better and better!

Really???

I know, it's been awhile since I've posted an update on the blog. Actually, that would be a good thing, as it means that Pauline is chugging her way along to recovery. And, I'm happy to say that she is slowly getting back to her usual routine. She is slowly getting her energy back. These are all good things that I am very happy for.

However, it is taking Mom's body longer to get used to the arimidex. She has been getting nausea every early afternoon since she started the drug. Thankfully, she still had some anti-nausea pills from her chemotherapy. These seem to be helping the nausea. Mom said that the nausea was actually worse than what she felt during her chemotherapy. She felt like she had morning sickness. The oncologist said that it will take about 60-90 days for her body to get used to the drug. Other than that, the side effects have thankfully been minor.

We thought that she was all set with the $25.00 a month from Diplomat for the arimidex. She was officially approved for that going forward last month. However, yesterday, she received a call from them saying that there is now a generic version of the active ingredient in arimidex, anastrazole. Since there is a generic available, Diplomat will now not cover the arimidex. Mom's insurance company won't cover the generic at the moment, because it is so new, it isn't in their drug tier program. So, where does that leave mom and the cost of the drug? She is up-in-the air at the moment. I can't find alot of research on the generics yet, since it is so new. What I have found is that the generics are only slightly less cost than the brand name. How does that help my mom out with the cost of the drugs? Not much. So, now, she is back to working with the oncology nurse, the insurance company and the drug store to figure out something. That is why the name of the blog is "Really???" I just can't believe all that she (and I know that it isn't just her, but millions out there) has to go through to get the treatment that she needs. It's so frustrating!!

Testimonial Speaker

As you know from previous blogs, my Mom has been going to a chiropractor since the fall of 2009, a few months before she was diagnosed with breast cancer. Mom has suffered with fibromyalgia for 15 years. She was having pains in her head the past 2 years. She attended a seminar about fibromyalgia by Dr. Brian Ruocco of Power of Life Chiropractic in the fall. She received a free consultation and the rest is history! The manipulation exercises that she did was helping her head pain and body aches dramatically. Then, the breast cancer diagnosis hit in December. The chiropractic therapy changed to help enhance her immune system before her mastectomy in January. Since then, it has been more of a recovery therapy to help her recover from surgery and the 4 chemotherapy treatments. She has been a very vocal supporter for the work that Dr. Ruocco has done. She even persuaded the oncology nurse, Cindy, to go to a fibromyalgia seminar with her. Now Cindy is a patient of Dr. Ruocco! (which in itself is a huge mixing of the chiropractic world and the medicine world!).

Dr. Ruocco asked Mom if she would do a testimonial that he could use in a fibromyalgia seminar that he was doing this week. She told him that she would do better than that. She would show up and give the testimonial in person. I don't think that Mom is afraid of talking in front of people. She must have passed along that talent to me, as well. The seminar was Thursday. I asked her how it went and she just shrugged it off as something that she would do everyday. She also told me that she has been speaking up in the seminars and support groups that she goes to at the Moll Center. She talks about going to The Gathering Place and what service they have provided for her.

I'm so proud of Pauline for doing all of this. Most people who just went through chemotherapy feel self-conscious wearing hats, etc. Pauline has embraced all of the emotions that go along with recovering from chemotherapy and has channeled them to help others who are going through the same thing. This is so great. The more that she gets out there and talks to people, I think the better she will feel!

Pauline's Posse

I just started a team for the Cleveland Susan G Komen Race for the Cure for Pauline! The race/walk is on September 11, 2010 in downtown Cleveland. Our team's name is Pauline's Posse. Pauline is signed up to walk, so let's all encourage her as much as possible that she can do it!

Check out the action for the Pauline's Posse. When it asks you to join an existing team, you enter Pauline's Posse. You can sign up to join us in our walk or just donate to a great cause. More info to come!

Sunshine and Flowers

Every year for the past 8 years, Sue and I have planted flowers for my parent's patio. This year was no exception. Mom really enjoys seeing the flowers grow throughout the summer. Plus, all of her neighbors make comments about her patio flowers. The pictures are of the patio after we planted the pots this past weekend. I'll have to remember to take a picture at the end of summer to show how all of the flowers grew to take over the patio! Hopefully, mom's energy level will grow as the flowers grow over the summer.

Good news on the Arimidex cost. Mom has been given a grant to reduce the cost of Arimidex to $25.00 a month via a speciality pharmacy called Diplomat. . The drug arrived this afternoon. What a HUGE relief this is for my mom. I really don't know what she would have done if this didn't come through for her. She will start taking it tomorrow and we'll see what side effects (if any-hopefully not) we will have to deal with. The official road to being cancer free starts tomorrow!!!

Survivorship

Mom is officially a breast cancer survivor. She made it through surgery with flying colors. She made it through her chemotherapy treatment. Now, she will be moving on to the next step of her treatment-hormonal therapy.

This morning was Mom's follow-up appointment with Dr. Bagai. It's been 3.5 weeks since her last chemotherapy treatment. She is still suffering from extreme fatigue and body aches from the treatment. Dr. Bagai says that the side effects will be going away and she will be getting more and more of her energy back. Dr. Bagai is recommending Mom go on the hormonal therapy drug, Arimidex. I did research on the drug and it's side effects. Since Mom is post-menopausal, this is the drug for her. There are not many other choices. She needs to be on this treatment to prevent the cancer coming back or everything that she has been through (surgery and chemotherapy)in the past 6 months will be for naught. Since Mom has a higher chance for recurrence (found in the test on her tumor), she needs to be on some sort of hormonal therapy. We talked about the side effects with the doctor. Major side effects include body aches (mom already has these, possible bone loss, hot flashes and higher cholesterol. He recommends that Mom will also start taking a Calcium and Vitamin D supplement. He kept reminding us that these side effects are not life threatening and can be controlled. (unlike the side effects of chemotherapy, which have a chance of being life threatening)

The biggest worry that Mom has (other than recovery) is the cost. Arimidex is a very costly drug. It could cost her up to $500.00 per month while she is in the donut hole with her Medicare coverage. The drug is not available in a generic form until the end of the year. The Oncology nurse, Cindy, is going to investigate lower drug costs either through the drug company or another pharmacy for Mom. This was a big relief for Mom and I hope released some of her anxieties about taking the drug. Now, we wait for Cindy to work her magic with the drug company.

Cindy also gave Mom information on a survivorship program that Moll Center provides twice a month. Mom will go for her first time in 2 weeks. I think that this is just as important for her as going to the other support groups that she goes to. Once the battle with the insurance company and the drug costs are under control, Mom can then focus on her full recovery, while learning new skills to make herself a better person inside and out!

Relay for Life

Yesterday, I went to a Relay for Life event at Westlake High School with Mom, Aunt Janet and Uncle Bill. Aunt Janet is a 33 year breast cancer survivor. Mom is a 6 month survivor. They were part of the 100 or so honored guests of the event. Uncle Bill and I were there as Caregivers. We were all given t-shirts for survivors and caregivers. We listened to the opening ceremonies speeches. Then, the survivors and caregivers walked around the track. Aunt Janet pulled Mom up to walk around. Mom made it about a quarter of the way around the track, but she just didn't have the energy to walk the entire lap. Aunt Janet made it around the track. It was really emotional to watch the survivors walk by. Mom is now a survivor and I'm so proud of that.

The Last Side Effect Cycle

I knew that the last treatment would be the hardest for Mom. Dr. Bagai has mentioned that she would feel more fatigued and more achy as her treatments went along. However, Mom handled the 3rd treatment pretty well. However, the last treatment has really hit Mom hard. She is now in the middle of her "lowest point" for her blood counts, when she really does feel the worse. Mom pretty much slept on and off for the past 4 days. She went out today for a short time, but that exhausted her and she was back in bed. Her allergies have really been in overdrive. We don't know if having her nose cauterized last week is also playing a role in all of this as well. We go to the Ear, Nose Throat Doctor tomorrow for a follow up.

Mom has a busy week ahead of her with the follow-up tomorrow and then a visit to the chiropractor on Wednesday. Friday night, we are going to a Relay for Life event at Westlake High School. Then, she is going to a retreat in Burton, Ohio for newly diagnosed breast cancer survivors. This is sponsored by The Gathering Place. I reminded Mom that she has all of this to do this week. She asked me when she would feel better. I said by Friday. She needed a goal. Any encouragement for her to feel better is a good thing. She's nearly there. She can do this!

Sue and I are going to put together a team for Race for the Cure in September for Pauline. More information to come on that event. We need a name for our team. Any suggestions?

Follow Up

Mom had an appointment with an Ear, Nose, Throat doctor yesterday afternoon to find out why she has been getting the nosebleeds the past few weeks. She had another nosebleed late Sunday night. Thankfully, this wasn't that bad and with the "tricks" that the emergency room doctor taught us, Mom was able to get the blood flow to stop. Anyways, we went to the doctor yesterday. He said that she had a burst blood vessel in her left nostril. He cauterized the vessel all the while cracking jokes. At least that put her a bit at ease. Now, she has to use an antibiotic cream in the nostril and wait for it to heal. We have a follow-up appointment next week to make sure that it is healing.

Mom is officially over going to doctor's offices, hospitals, etc. I am there with her!! I never wanted to have to know all the information that I have researched, but I have. Now is the time for Mom to recover and regain her health, strength and mental well being.

Mother's Day was very mellow for the family. We went to Sue's house for dinner. Mom was very tired and achy. She just sat and watched the kids play and wasn't very interactive with them. Once she feels stronger, she will be more interactive with the kids. (which I think will be a big factor in helping her heal). Mother's Day also put the past 5 months into perspective for me. I realized, even more than I already do, that it is important to cherish every minute with your parents!

Last Chemotherapy Treatment...With a Twist

Friday was Mom's last Chemotherapy treatment! That is something to celebrate! This will be her last time dealing with the chemo side-effect cycle!!! Everything went relatively smoothly during the treatment, it was later in the evening that the excitement happened.

We had our usual 7.5 hour day at the chemo lab. It started with her blood tests, a visit with the doctor and then off to her treatment. She got in the chemo lab about 10am and we left at 4:30pm. Her sugar level was elevated as in the past few weeks, due to the steroids. Dr. Bagai was concerned with that, so the nurse kept testing her sugar level and Mom got a few small doses of insulin. He also told her not to take the steroids at home the day after treatment. Mom was happy with that because the ups and downs of the sugar-level really messes up her system. Mom's red blood cell count was just a tad low of normal this time around too, but the doctor didn't seem concerned. Knowing that this was her last session, just made the time drag. We all wanted it over. Mom, Dad and I struck up a conversation with the patient sitting next to her and his family. They have been there the past 3 treatments. He has lung cancer and one more treatment to go. That helped make the afternoon go by quicker. Mom didn't have a reaction to the taxotere this time around. I kept watching her for reactions and this time, thankfully, she was fine. We have an appointment for the follow-up and next steps on June 1st. The doctor did mention that for sure she would be on a hormone treatment for the next 5 years. More on that when we get the official word from Dr. Bagai.

Now for the excitement! I drove Mom home from treatment. We got home and she got settled. I headed off to work for the evening at Steinmart, which is across the street from my parent's condo. I get a call from Dad at 8:15pm saying that Mom has been having a severe nose bleed for the last hour. Dad called the doctor and he said to call 911 and go to the hospital. I got there as the paramedics had arrived. I helped answer questions as they got Mom on the stretcher. Her nose was still bleeding. So much so, that she couldn't change out of her nightgown (which was covered with blood drops) or slippers. I gathered her robe and a jacket, then Dad and I headed to Fairview Hospital. . Mom's nose stopped bleeding in the emergency room. We settled in for a wait to see the doctor. I think that they were waiting for her nose to stop bleeding, before they did the visit. The doctor said that the nose bleed wouldn't be because of the chemotherapy, but her system is compromised, which does make these types of things happen. He said that would take some blood tests to make sure that the blood was clotting okay and let us decide if he would "pack" her nose or leave it as is until she saw an Ear, Nose and Throat specialist. Mom opted not to have the nose packed. Mom was released 2.5 hours after she got to the hospital. I dropped off Mom and Dad by midnight. As Mom was getting ready for bed, the nosebleed started again. It kept going for an hour, before she was able to get it to stop. Thankfully, the nosebleed hasn't come back since. What a day!!

I took mom to get her neulasta shot yesterday afternoon back at Fairview Hospital. Then, she wanted to run a few errands. She was doing pretty good. She has to get through this side-effect cycle and then she will be on the road to getting her health back. I have to say that I'm glad that I won't have to go back to the chemo lab. Not that we didn't get great care there, but it has too many negative connotations for me. I want to focus on the positive.

Family Time

Sunday evenings are family dinner time at my parent's house. We have been doing this since both my sister and I moved out of the house, so it is a long tradition. Sue brings the kids over and we have play time and a good hearty meal. Mom has been handling these gatherings pretty well during her chemotherapy. There have been times that she can't hold or lift Brynn or Beckett due to colds, etc. Plus, mom couldn't lift Brynn after her biopsy in December and surgery in January. Most of the time, Mom watches the kids play from afar. She says that she enjoys that just as much as lifting the kids! Well, last night, even though Mom was feeling very tired and achy, she lifted Brynn and gave her hugs and kisses. It was so sweet to see. The pictures are of the playing chaos with Beckett and Brynn last night.

Mom also forgot to put her scarf or hat on last evening when the kids came over. But, Beckett or Brynn did not seem to mind at all. Mom's hair is very thin, very short and gray, so it is a difference from just a few months ago. The kids didn't seem to even notice. That is actually a relief for mom, because she isn't a big fan of wearing the hats and scarves. She did get some cute hats, which she does look cute in, so that is a help. She doesn't quite have the head for the scarf-look.

The countdown to the last chemo treatment has begun...Friday, May 7th is the last treatment and then we go on to the next stage of her treatment against breast cancer returning.

An Afternoon Outing

Mom and Dad wanted to go on an outing this afternoon. Dad has been wanting to go to the Cleveland Museum of National History for years. Today was a perfect day to make that trip. Mom had a bit more energy, even though her legs were really aching. So, we ventured to University Circle and the museum. Mom would wander in room and then found a bench to wait for Dad and I to see the exhibits. Then we would go to the next room and repeat the process. I hadn't been to the Museum in at least 10 years, so it was nice to wander around seeing the dinosaurs, gems and minerals and animals. After the museum, we took a tour of Lakeview Cemetery. Yes, it does sound morbid, but I was on a mission to find Daffodil Hill. Dad was not so thrilled to be driving around a cemetery in a downpour, but Mom and I thought that it was an adventure! We drove around until we were actually driving by Daffodil Hill! It was much larger than I thought and really pretty, even in a rainstorm! The day was topped off with an early dinner in Little Italy at Trattoria. Yummy! It was a long afternoon out for Mom, but she did very well, especially as this is the time that her blood counts are really low. I'm sure that she will be relaxing tomorrow, though!

Plugging Along

Mom is in week one of the side effects cycle. Her chemotherapy treatment was a week ago. Thankfully, Mom has not had issues with nausea. She is given anti-nausea medicine in her pre-treatment drugs. Plus, she has a prescription for anti-nausea medication. She takes those pills for a few days after the treatment, but that is it. Obviously, the hardest thing is the fatigue and the body aches. The second hardest thing is regulating her glucose levels after she is off the steroids, which she has to take for 3 days around her treatment. Once that is re-regulated, she is feeling much better and feels that she can get out and do things.

Wednesday, she had a busy day with going to see our hair stylist, Stephanie and then going to her chiropractor. Mom was in major need of a haircut before she started chemotherapy. But, with her hair coming out, it really needed to be cleaned up. Mom opted for a short pixie cut. We don't know if she will lose more hair at this point, but if she does, it won't be as traumatic with her hair shorter. Also, whatever hair is left is pretty gray. It is a bit strange to see as Mom has been going gray the past few year, but she still had her brown color. It will be a surprise to see what color her hair comes back in. Thanks Stephanie for your help!

Yesterday, Mom was in a shopping mood, so we went to Dilliard's so she could get some new spring clothes. I did a quick trip to another store in the mall, while Mom waited. But, she wasn't alone when I got back, she saw a neighbor walking in the mall and started talking to her. This neighbor will stop at Mom's door to get her out and walking, which is a really good thing!

Starting today, Mom's blood counts will be at it's lowest level for the next 4-5 days. This is also the time when she feels depression. According to Dr. Bagai, this is natural as she is feeling her worse. Then by the end of next weekend, she is feeling better just in time for the next treatment. It is all in cycles. Thankfully, we will only have to go through this one more time!

Three Down....One More To Go

Friday was Mom's third chemotherapy treatment. Only one more treatment to go!! We can see the end of the tunnel of treatment!

It was another long day at the chemo lab. We got there at 8:30am for blood tests and the doctor's visit and didn't leave the lab until 4pm. Mom's blood tests were okay other than an elevated glucose level. This is a side effect of the steroids that she is on to help prevent reaction to the chemotherapy drugs. So, basically, one side effect from a drug can wreck havoc with another side effect of a drug. I told Dr. Bagai Mom's side effects and he said that they were all the usual side effects. He was pleased that she hasn't had anything more extreme due to her other health issues. I asked the doctor about the fatigue and body aches and he said that it will get worse for the last two treatments. I also asked about the depression that Mom has the second week after treatment. He said that could happen because during the second week after treatment, Mom is feeling the worse. It is strange, as soon as that second week is over, Mom's depression goes away. Dr. Bagai wanted to keep an eye on her glucose count this time during treatment. He lowered the dose of one of the steroids that she receives as a pre-chemo drug. Because of this, there could have been a chance of mom having another immediate reaction to the taxotere. So, we watched her for any reaction when she received the taxotere. She seemed to have a slight reaction to the taxotere. She said that this time she felt the medicine going into her body. The nurse kept an eye on Mom for 15 minutes and kept asking questions, but Mom said that the feeling went away and no other reactions occurred. The taxotere was on a 3 hour drip again and then she had the cytoxan for another hour. Mom only has to go through this one more time on May 7th.

I think that I have mentioned before that being in the chemolab is quite an experience. There are all different types of patients in all different levels of treatments. It is always amazing to watch the nurses at work with the patients, too. To make the day even more lively, an older patient passed out in the bathroom. There was a "thud" and one of the nurses said "What the Hell was that?" and all the nurses went running to the restroom. Nurses called for a doctor, they called for a "code blue" at the hospital and called 911. Doctors from the hospital (directly across the street from the Moll Center) came running. The patient came to as the paramedics arrived. He was taken to the emergency room and released a few hours later. Three weeks ago, the paramedics were at the chemolab to take an elderly patient to the hospital. Seeing all that definitely puts my mom's illness into perspective.

On a happier note from the day at the chemolab, my Mom saw another patient who she met at breast cancer seminars provided by the Moll Center. Lori was having her second treatment yesterday. She is under a more aggressive and intensive treatment than my mom, but her attitude is so positive. Lori and my Mom are perfect matches for survivors. They can both spread their positive attitudes to others around them. Mom and I also ran into Lori and her husband at Fairview Hospital yesterday afternoon so they both could get their neulasta injections. I think that contact is so important for any cancer patient. This is just the way that my mom is, she will talk to anyone!

The Upswing Week

Mom went out with her longtime girlfriends this afternoon for a choir concert. It was the first time that mom has been out and about in a few days. I hope that she is having a good day!!

This should start the "upswing week" for Mom. She started to feel better the 3rd week after her treatment, just in time for her next treatment. Hopefully, this will hold true this time around. The fatigue and really achy legs have been rough for this round of treatment for Mom. Add on the bad allergy season to this and Mom hasn't been feeling that great the past two weeks. It was a battle to get mom out to do things for the past week. I mentioned that she need to go for a walk multiple times, but I don't think that she did. The fatigue won out. I have a feeling that it will be more of a battle to get her to do some exercises and walking for the next month.

A week ago was our family Easter gathering. Mom did very well! She and Aunt Marilyn were the "queens" of the event. Everyone came up to them, instead of Mom and Aunt Marilyn going to them. It was a very nice gathering. I barely got to talk to either of them, as I was keeping an eye on Brynn and Beckett.

Mom has started to receive statements and bills from Cleveland Clinic and her insurance company. If you didn't know a statement of services from an actual bill, you would be in big trouble! The insurance statements in themselves are confusing to me, but thankfully, Mom understands them. I told her that obviously she needs to concentrate on the bills from the Clinic. This would actually be what she owes, because the insurance company has finished negotiating the prices. Speaking of prices....this is an eye opener. Mom received a statement from the insurance company for the neulasta shot that she receives the day after chemotherapy. The Cleveland Clinic billed the insurance company $13,000 for the shot. Yes, I said $13,000!! The actual cost was renegotiated to $6,000. Mom will have to pay $428, so far. This is an example of the craziness of the health care costs! This is only the beginning of the bills coming in......

Breast Cancer in the News

Martina Navratilova, the tennis great, has just announced that she has breast cancer. She had a lumpectomy and will have 6 weeks of radiation. She is one of the many famous women who have fought breast cancer in the last five years: Melissa Etheridge, Sheryl Crow, Christina Applegate, Robin Roberts and Kylie Minogue to name a few. All of them go public and re-iterate how important it is to get yearly mammograms. Martina mentioned in the video how important a support system for the cancer patient is as well. I believe that the more that you know about what you have to deal with, the better it is. That is why I wrote this blog.

Flowers

Mom got these flowers sent from her nephew, Paul, who lives in New Jersey, a few days ago. Very pretty and it definitely brightened her day! Also, a belated thanks to Karen for her lovely daisies. Sorry, I didn't get a picture of them, but they were very appreciated.

It's been a whirlwind of family activities for Mom for the last few days. She can handle one activity a day and then she is totally wiped out. Friday night and Saturday for lunch, was a visit from cousins Bruce and Joyce. This morning was Easter basket fun with the kids and tonight will be family Easter dinner. She'll be pushing it energy-wise for the dinner tonight, but she will be a trooper and will be there. I think that she is looking forward to seeing family. Aunt Marilyn is supposed to be there as well.

She "stumped" the oncologist on Friday. Brynn broke out in a rash as a reaction to her rubella/mumps shots earlier in the week. Brynn also has a cold. Sue called the pediatrician and asked about Brynn and Mom being in the same room. Mom also called Cindy, the oncology nurse about it. Both doctors had to look up information, because they hadn't had that question asked before! Cindy told mom that she can admire Brynn from afar, but she can't touch her. That was the same thing that the pediatrician said. So, Mom admired from afar, but Brynn kept coming up to Mom wanting to be held. It was so sweet and a bit sad at the same time. Beckett can still give hugs though and that is most important.

The Side Effects Cycle

Mom is in the middle of her second side effect cycle. Some of the issues (specifically stomach issues) that she had directly after the first treatment didn't happen this time around, because she knew how to handle them. However, she is more fatigued this time around and her legs ache her a bit more than the last treatment. The goal is to get her out and doing things, even if it is just for an hour outing. Getting out and walking is very important. Tomorrow, Mom will be at her low red, white and platelet blood cell counts. This is when she will be especially tired. Then, she will start on the upward steps to feeling better, just in time for the next treatment!

Mom feels that she is suffering from chemobrain. It is an actual side effect from chemotherapy. Mom doesn't feel that she can focus or can concentrate as she had before chemotherapy. She is a bit afraid to drive because of this. I took her out to do some shopping yesterday afternoon because she didn't feel focused enough to drive. After her first treatment, I teased her about having chemobrain and she actually got upset with me, so now, I don't tease her about it, only if she brings it up.

We have family events coming up this weekend, so Mom will be doing a few things. My cousin Bruce and his wife will be in town on Friday to visit. Easter morning will be spent at Sue's house watching Beckett and Brynn find their Easter baskets and then Sunday evening is our family gathering back at Sue's house. Mom got out of preparing her usual strawberry salad for the dinner and she will be bringing dinner rolls instead. We'll have Mom and Aunt Marilyn sit on the couch and have everyone come to them! By the way, Aunt Marilyn was released yesterday from the rehab facility. She is now getting adjusted to the apartment at the "independent" living apartment.

Mom is getting used to wearing her scarves and hats. Her hair has definitely thinned, but she still has some of her hair. She keeps saying that she doesn't have any, but she does. Beckett, with some prodding from Sue, told Mom "Mama looks pretty" on Sunday when he saw her with the scarf on. He wanted to pull at it, but we told him no. He kept looking at Mom like something was different. Of course, he knows, but I'm sure that she doesn't understand. But, telling Mom that she looked pretty was so important.

2 Down.....2 More to Go

Mom is half way through her chemotherapy treatment!!! Today was a very long day, but thankfully, it went much more smoothly than Mom's first treatment 3 weeks ago. I got to the Moll Center (at Fairview Hospital) at 9am. Mom was just finished with get her blood drawn as I arrived. We then had to wait nearly an hour to meet with her oncologist, Dr. Bagai. He met with us for maybe 10 minutes max. I walked him through a list of mom's side effects, which looks quite intensive, but actually are the normal side effects that occur with the two chemotherapy drugs that she is on. He also talked about the extreme reaction to the taxotere that Mom had during the first treatment. He said that the infusion of the drug will be even slower this time and Mom would get an additional dose of a steroid to help against any allergic reactions as well. Dr. Bagai said that she could be more fatigued with this treatment. So, we have to make sure that she stays as active as possible. Naps are fine, but walking, going out and about, etc are even more important.

Mom had received a list of supplemental vitamins from her chiropractor. I asked Dr. Bagai about using the supplemental treatment, but he said that these supplemental drugs could cause an adverse reaction to the chemotherapy drugs and that the drugs are not FDA approved. He doesn't mind Mom having the chiropractic treatment, but not any additional supplements.

After meeting with the doctor we headed to the chemotherapy lab for the rest of our day's adventure. Mom was started on her pre-medications (steroids, anti-nausea, pepcid and benadryl). These medications take nearly an hour to go drip. Finally at nearly noon, Mom got her taxotere. We (including her nurse) were all watching for any of the immediate side effects. Thankfully, with the drip being so slow, her body was able to absorb the drug. No immediate side effects!! Mom was on the taxotere drip for 3 hours. When Mom got her lunch, Dad and I went out for lunch. We got back and still had a good hour to go on the taxotere. That finally finished and then Mom got her cytoxan.. This is a 1 hour drip what doesn't have immediate side effects. We left the chemotherapy lab at 4:30pm.

Long day. Mom was very tired, but wired at the same time. The steroids make you restless and unable to sleep. However, I really hope that Mom can get some sleep tonight. She needs to get some rest. Tomorrow, we go to Fairview Hospital to get her neulasta shot. Then, we start the side effect cycle all over again.

Sitting in the Chemotherapy Lab for 6 hours is quite an eye opening experience. You see people in all different stages of their treatments; some with cancer, some with other diseases that need to have special infusion treatments. Mom doesn't bring books or things to do while she is on treatment because she really likes to take in everything that is going on around her. She will strike up conversations with other patients or the nurses. For example, she was asking another patient about the hat that she was wearing to cover her chemotherapy bald head and compared their types of cancers. The nurses do their best to make everyone as comfortable as possible during their treatments while running around the lab. They really are a great bunch of people.

I'm so happy that treatment #2 is done. Two more treatments to go! The next treatment is April 16th and the final one will be on May 7th.

The Most Noticable Side Effect

Mom is now experiencing the most noticeable side effect of chemotherapy: hair loss. We knew that it was coming (2-3 weeks after her first treatment), but it arriving doesn't make it any easier. A chemotherapy patient can hide the side effects of fatigue, bone pain or stomach issues. However, they can't hide hair loss. I personally think that this is going to be the hardest side effect for mom to deal with. She could work through the nausea, the bone pain and fatigue, but hair loss is not something that can be worked with or worked around. Now will be the time to wear hats and scarves (once we figure out how to tie them!)

Mom started mourning losing her grey/brown/white curly short hair yesterday. It is now coming out in clumps. A person that doesn't know what she is going through might not notice it, but of course she does. I told her that it is okay to mourn her hair, it is all part of the process. This is a big thing for her, because now she will look like someone who is battling cancer and all along, she hasn't looked like that at all. She hasn't looked like she had breast cancer (but, really who does?) I told her that now she will have a badge of honor. She is battling to make sure that cancer doesn't come back. And she is going to win this battle!!

I haven't seen her yet and I won't see her until Friday morning, when she has her treatment. I already told her that she is beautiful to me no matter if she has hair or not. That is the most important thing.

Feeling a Bit Better, Just in Time for Treatment #2

Mom has had an uptick of energy the past two days. She's feeling a bit better, just in time for treatment #2 on Friday. We sat down yesterday and walked through all of the side effects that she has had in the past two weeks. I wanted to have this list when we talked to the doctor on Friday morning (before her treatment). It is a pretty long list, but thankfully, it was nothing that couldn't be dealt with with the nausea medication or the pain medication. The roughest 2 side effects are the body pain (especially in her legs) and the fatigue. I'm not sure if the leg pain was from her neulasta shot or if it is a regular side effect. I'll ask the doctor about that. She also had pains in her head, like someone was pulling her hair, which is the signal that the chemotherapy is going at the new cells (or hair growth).

The most visual side effect is starting this week-hair thinning/hair loss. Mom has noticed today, where she didn't notice it before. She went to lunch with 2 girlfriends today and they didn't notice anything different. But, now mom will be self-conscious. I told her to start wearing the cute hats that we bought last week at Elegant Essentials. She had some training on how to tie a scarf, but I don't think that she remembered how. She looks cute in the hats, so I think that she will lean towards that.

I wanted to give an update on her battle with her insurance company for her stomach medicine, protonix. After spending most of Friday on the phone with the insurance company, she finally got word from them that she can have the stomach medicine (at the higher rate, of course) until September. She was given a reference number to use if she gets another letter next month from the insurance company that the drug won't be covered. Oh, the joys of insurance.

Health Care Debate

Fatigue has set in for Mom. Add a seasonal allergy attack and Mom is just exhausted. Yesterday, we celebrated Brynn's official birthday with ice cream at Sue's house. Mom and Dad stopped by to celebrate after having dinner with other family members. Mom barely made it through dessert, she was just that tired. She was also afraid about about being so tired and driving home. The literature about side effects and the information from the nurse say that fatigue is a very big side effect for chemotherapy treatment. The literature also say to work with the fatigue, for example take short naps. However, the nurses say that staying in bed and not being active also leads to more fatigue. It is a Catch-22! So, the challenge for Sue, Dad and I is to make sure that Mom stays active to a point. We don't want her to overdo it, but she does need to be active.

An issue that I know is weighing very heavily on my mom's mind is how to pay for the cost of her treatment that is not covered by her insurance. Currently, Mom is under Medicare and a supplemental insurance (I will not name the company due to Mom's request) that is required for Medicare participants. Mom has already had issues and discussions with her insurance company about other drugs that she is on. In fact, she has been battling them more recently for one of the drugs that she takes, protonix, for her stomach issues. The insurance company is saying that this drug will not be covered by insurance anymore. First they told her that the drug has been put into a different tier and she will have to pay $85 for refills of the drug compared to the $7 that she used to pay. Now, they are saying that the drug will no longer be covered under insurance. So, Mom is battling with them about the drug. She has had the primary doctor and her pharmacist send information to the insurance company as well, but it is to no avail. I have done research on the drug and she has even tried others, but they do not help her stomach issues. This is very worrisome, because who knows what the insurance company will end up charging for her chemotherapy drugs and treatment. If they can pull the coverage of one of the drugs, what says that the insurance company will cover her treatment? Mom has been talking to a nurse from the insurance company on a weekly basis. It seems Mom has been "red flagged" because of her fighting the company. So, the nurse asks about all of her drugs, her treatment, etc. The nurse is also recommending adding anti-depression drugs (which I personally don't think is right on her part to do). Maybe, if Mom keeps talking to the insurance company, they will help in the long run? I don't know.

I don't want to get overly political on this blog, but all of the issues that my mom is going through is showing that the health care system has to be reformed. This includes reforming insurance companies, so they don't have all the say in how a patient is treated. The health care debate is the biggest political story as Congress is voting on this very important issue this weekend. This debate will affect us all.

One week from today is the 2nd chemotherapy treatment. 2 more to go after that one. I want to make sure that we have a complete list of Mom's side effects. We will meet with the doctor before her treatment and I want him to know everything that she has gone through with her treatment.

Recovery Week

This is technically a "recovery week" for Mom. Her side effects should be subsiding and her system will be building itself back up just in time to have her next chemotherapy treatment on March 26th. At the moment, mom is suffering from seasonal allergies. They are hitting her even harder this season. This is, of course, enhancing her achy body and fatigue side effects. The stomach related side effects are at a minimum at the moment, so that is a good thing.

Brynn's 1st birthday party was Saturday, March 13th. I would say that both Brynn and Mom were the center of attention. Family and friends came over to Mom to ask her how she is doing. Then, they would come to me to say, "You're Mom looks great for what she is going through". Of course, I totally agree with that, but she's just been through one treatment and there are 3 more to go. Anyways, Mom did great during the party and really enjoyed herself. That was most important to me. She even made new friends with a stuffed polar bear that Brynn got from her other grandparents. The next test will be Easter family gathering. This will also be a week after her chemo treatment.

Side Effects and Fittings

It's been 8 days since Mom's first chemotherapy treatment. She is still dealing with different side effects and they seem to change on a daily basis. The one that is continuing is the achy legs and fatigue. Mom's fibromyalgia of course doesn't help matters much with the pain. The stomach issues are still on-going, but not as bad as they were in the beginning of the week. Mom did discover a small dime-size sore on her right arm yesterday. This is a signal that her platelet count is low. Mom called Cindy, the nurse about it and she said for Mom to keep an eye on it. Mom is at the lowest point of her blood counts (red, white and platelets)right now. This takes place 7-10 days after the chemotherapy treatment. After this weekend, her blood counts should start going up again just in time for her next treatment in 2 weeks.

Mom went to a program provided by the American Cancer Society on Tuesday evening. It was called "Look Good Feel Better" . This was a 2 hour seminar for women going through chemotherapy. It helps with make-up tips,(Mom rarely wears makeup)hair tips, and how to wear a scarf or hat during chemotherapy. She got some suggestions on hats from other survivors that were at the seminar. Mom is going to try to go to another seminar at the end of the month for breast cancer survivors.

Today, Mom and I went to Elegant Essentials to purchase bras and her prosthesis. We also picked up two hats and a pink ribbon scarf. Having the prosthesis is a great next step in her recovery. She's more comfortable and that is the most important thing.

Tomorrow is Brynn's 1st birthday party. This will be the first time that alot of friends and family will see mom since the surgery and since treatment started. Mom has definitely been looking forward to this party. We all have!

Oh the Joys of Side Effects

Sarcasm...Really.

Side effects of chemotherapy are not so fun. Mom has been a trooper so far, but the side effects really started to hit her Saturday. She has said that her legs ache very badly, she's fatigued and she was/is having issues with constipation. We were told that the achy legs would be a side effect of the neulastra shot that she had on Friday. But, it is also a side effect of the chemotherapy drugs. Plus, Mom has fibromyalgia, so her body aches alot. Adding the chemotherapy drugs into her system isn't helping that pain, but is accenting it.

Mom has been out and about shopping, running errands in the past few days and today was having lunch with Sue, Dad, the kids and me. She's probably doing too much at the moment, but she is doing all of this in moderation. We shopped and ran errands for 90 minutes yesterday and then she went home and napped. I think that much activity is all that she can handle at the moment. Mom called Cindy, the head oncology nurse yesterday with her concerns about the constipation and the achy body. Cindy told us what to get for the constipation (which we already did) and gave her a prescription for the achy body. (which make Mom a bit loopy!) As for the fatigue; Mom will just need to rest when she is tired. Short naps are good.

Sunday evening meal at my parents was a total meltdown between Beckett having his own constipation issues and Mom's issues. That was not a fun time. Luckily, both Beckett and Mom corrected their issues since then. (so to speak)

It's been nearly a week since the first treatment. I'm keeping an eye on Mom for any other side effects that might pop up. This weekend is Brynn's 1st birthday party. We already have a plan to keep Mom away from anyone with a cold and have lots of hand sanitizers on hand! I know that Mom wouldn't want to miss the birthday party for the world.

The Day After

I was keeping an eye on (babysitting) Mom all day yesterday. I wanted to keep an eye on her for any side effects that would have us calling the nurse and doctor right away. I didn't know what I would expect to happen, but I wanted to be there just in case. Mom was fatigued, but otherwise she was doing pretty well considering what she went through during her first treatment. Mom got a really good night of sleep (7 hours straight, which is a rarity for her). I think that was a big help. We had to go get the Neulasta shot at our new home away from home, The Moll Center at Fairview Hospital in the afternoon. We headed to the Moll Center after she had a good lunch. She was taken in right away to get her injection. Patty saw us and asked how she was doing and if she felt flushed in the face in the morning. Mom said she was doing okay and no, she didn't feel that. The nurse who gave Mom the injection asked how she was doing, especially after what happened during the treatment. Mom said doing okay. I said no major side effects at the moment, so that is a good thing.

As we were leaving, I asked Mom if she was up for doing a walk thru at Kohl's. It's Brynn's 1st birthday next week and I was looking for an additional gift. Mom said sure. We did a walk through and Mom of course bought the most! But, that trip tired her out. We headed home and she just rested a bit. Sue and Jeff brought the kids over and we had take out from Stonehouse Grill for dinner. I think that having the kids there was an extra boost for mom. Beckett was keeping an eye on his Mama. He wasn't quite sure what was going on. Sue has been telling Beckett that Mama would be going through treatment and that she could lose her hair and be sick. He needs to be gentle with her. Sue passed along that she overheard Beckett talking to Jeff and out of the blue said "Mama is going to lose her hair". Obviously, he's paying attention to what Sue is saying! Does, he fully understand it, probably not.

I just checked in with Mom a bit ago and she said that she did wake up feeling nauseous in the middle of the night. She took some of her anti-nausea medication, ate a few pretzels and went back to bed. I'm trying to find information on the timeline for the side effects, but I'm not having any luck. For example, do they hit all at one time or happen over a series of days? Back to researching for me.

One Down...3 More to Go

What a long day. I'm exhausted mentally and physically. We were at the Moll Center Chemotherapy Lab from 9am until 4:30pm today and then I worked at my part time job at Steinmart from 5pm until 9pm. I'm beat, but wired at the same time (must be from all the caffeine I have been drinking!)

Mom's chemotherapy didn't go exactly like we thought it would, hence the long day. We got there at 9am to start the labs portion, so they can check her blood levels. We then waited a good 20 minutes outside the lab before we went to the chemo room. Mom finally got settled into a recliner in the room about 10am. They started the pre-treatment about 10:30am. We talked to the center social worker as well. She gave Mom some info on wigs, (I don't think Mom was going to get a wig), seminars and other services that she can help set up and provide. Mom's pre-chemotherapy treatment included pepcid, a steroid and benadryl. These were to help against the immediate side effects of the first drug, Taxotere Mom's sodium was still a bit low, so she got a saline drip as well. The nurse, Patty, started the Taxotere and was going through some basics for the side effects and what should be done, all the time watching Mom for immediate side effects. About 3 minutes into the infusion, Mom started complaining of intense pain in her lower back and right leg. Patty immediately turned off the infusion, called for help with nurses and called for a doctor who was in the center (Mom's doctor was not in the office today). The doctor prescribed a small dose of morphine and more steroids. Mom got those right away and one nurse brought oxygen. Mom was in alot of pain. It was scary to watch. All of this happened very quickly and was taken care of very quickly. Within 5-10 minutes the pain subsided and mom relaxed (or as much as you could relax after that episode). Patty got in touch with Dr. Bagai and he said to made the infusion slower and to see how she reacted to that. So, 30 minutes later, Patty tried it again, but at a slower drip. Patty kept an eye on my mom for any reactions and thankfully, there was none. The Taxotere took 2 hours to drip. At 3pm, she was ready for the next drug, Cytoxan. Thankfully, there was not immediate side effects from this drug. This drug took an hour to drip. Once that was finished, her IV was flushed with saline solution and then she was released at 4:30pm.

I know that the first treatment is always the hardest. We weren't prepared for how hard it actually turned out to be. But, thankfully, Mom pulled through this all and was able to handle the two drugs. Watching her have the reaction was very hard to do and I think that my heart was still racing at least a few hours after it happened. I can't even imagine how she was feeling. Tomorrow, we are going back for her to get a neulasta shot. This will help stimulate white blood cells and help prevent infection. I'll be watching mom for any side effects as well.

She made it through this one....3 more to go. I figured out that she will be done with treatment May 7th. Let's hope the time flies.

Time flies when you are having fun....

The next step to Mom's treatment against breast cancer starts tomorrow morning. It has been nearly 2 months since she was diagnoised. The time has flown by. I really hope that the next 3 months will go by just as quick. The sooner that chemo is over and the recovery fully begins, the better it will be.

I have alot of people asking me how I am doing through all of this. I'm taking it all in strides. I have my up and down days. Noone wants to hear that someone that you love has cancer and then has to go through chemotherapy. It is not a fun thing. I want to find out as much information as I can about what my Mom is going through, what drugs she will be taking and her side effects. I seriously thought (and hoped) that Mom was going to get through this without chemotherapy, but alas that didn't happen. She is doing this as a preventative measure, so the cancer will not have a larger chance to recur in the next 10 years. I would much rather have Mom around than for her to have to go through this again. I have to keep thinking that and I know that she will get through this. The side effects could hit her hard and that will be scary for us all or they could not hit her at all. I'm just hoping that it is leaning towards the "not at all" side.

I'll be with Mom and Dad tomorrow at the Moll Center for Mom's first chemo treatment. I don't know if I can be with her the entire time as the center only allows one family member in with the patient at a time, so Dad and I will have to trade off. I'm prepared with a couple books to pass the time. Her treatment could take up to 4 hours. She has two one hour long infusions of her two drugs.

I've seen the effects of chemotherapy on two of my friend, Barra, who is now cancer free and Andi, who lost her year long battle with leukemia 2 1/2 years ago. Those are two different types of cancer and two different types of chemotherapy. Leukemia is brutal. Andi stayed strong throughout her battle and that is something that I will never forget about her. We would call her chemotherapy, "Ajax", as it looked just like the cleaning agent and we said that it was being used to "clean her out". Barra has been an inspiration through her own battle with breast cancer (and a great source for information!).

Thanks to my friends and family who have been asking about my mom, my family and me! It is very very appreciated. Thanks for being there for me!

Anxieties

It is two days and counting before Mom's first chemotherapy treatment. The anxieties about the possible side effects are on everyone's mind. Obviously, the biggest worries are about the possible nausea and the reaction to the steroids that mom will be receiving from the Taxotere. (The steroids will affect her blood sugar level to the extreme. Mom really has her diabetes under control, with her insulin shots, but the steroid use could cause her blood sugar levels to go sky high.)She is also worried about the other side effects-mouth sores, problems with her blood counts and of course hair loss. I keep telling her that she might not get all of the side effects, so she shouldn't focus on them. Be prepared, if they happen, but we'll deal with them as they come up.

Mom made it through the mastectomy so well. I know that she can do it through chemotherapy, too. This is going to be tougher on her system, but she can do it. She has to do it. We DO NOT want the cancer to come back!!

Information Overload-The What Ifs with Possible Side Effects

Yesterday, Mom, Dad and I had a meeting with Cindy Williams, Dr. Bagai's head oncology nurse. We met with Cindy for over 2 hours at a place that will has become very familiar to us, the Fairview Hospital Moll Center. This was an informational meeting which included a video, discussion on side effects and then a tour of the chemotherapy room. We were given lots of information about chemotherapy side effects in general and then the possible side effects of the two drugs that mom will be taken. As Cindy told us, she was the one that gives the scary news about all of the side effects. Cindy's mantra was "Call her". There are many factors that are immediate calls and other ones are just calling for advice. The immediate calls would be a 100.5 fever (or neutropenic fever), severe headaches (Mom already gets headaches, so she will be able to tell the difference for different types of headaches), severe mouth sores, severe nausea and or diarrhea.

There could also be side effects with her blood counts (red cells, platelets and white cells). Her blood counts will be on a "roller coaster ride" from the start of her treatment. She will start with regular counts, then they will head "downhill" over a 7-10 day period and then they will go back "uphill" after that period. Then, she will have another treatment and this will happen all over again. We'll have to look for any possible very low counts that could be a problem. These super low counts would be another reason to call Cindy.

Mom will be getting a steroid when she gets her Taxotere. This could be an issue, because steroids cause blood sugar to jump sky high. Mom is diabetic and has had her insulin pretty much under control. Cindy was concerned about the dose of the steroid. It might be reduced and Mom could also be given some insulin during her treatment if her sugar level jumps sky high. But, the steroid is needed because of a possible allergic reaction to the Taxotere.

We asked Cindy about Mom continuing with her all of her other medication (and there is plenty) and Cindy said to stay with them, there shouldn't be a problem with that. Mom will be meeting with Dr. Bagai before each of the treatments (he already met with her for the treatment next week) for any side effects or changes in her system.

Of course the main two side effects will be nausea and hair loss. Mom will be given a prescription for nausea medicine. She will also be given a nausea medicine with her chemotherapy mix, so that will be in her system for at least a few days. The hair loss is of course a hard thing. Each drug will vary on the amount of hair loss. It all depends on the patient. Barra was so sweet to give mom a bag full of head scarves. Mom is opting not to wear a wig. She and her friends are already taking bets what color her hair will come back as. Humor wins the day!

We are lucky. This is a short treatment schedule. It will seem like a lifetime during it for Mom and us, but is will only be a total of a 12 week treatment cycle. Cindy also reminded us that this is preventative. This is to make sure that any microscopic cancer cells that are in her body are destroyed, so we do not have to go through this all again. I DON'T want that to happen and I know that my Mom doesn't want that to happen either.

My brain is on information overload!

Treatment-Bring It On!

Today, Mom had two doctor's appointments: the surgeon, Dr. Pratt and her soon to be oncologist, Dr Bagai. The visit to see Dr. Pratt was to see how she is recovering from her surgery, which was 4 weeks ago yesterday. She is healing really well, I think better than they thought that she would be. Mom's range of motion is very good, which means that she is doing her exercises. The healing well is good news! Dr. Pratt also walked us through the Octotype DX test results. The results showed that Mom's tumor showed a higher risk of recurrance. Out of a range of 1-100, Mom's result was a 42. This is considered a high risk of cancer coming back in the next 10 years (even with being on a hormone treatment). Mom's risk would be 30% that the cancer could return in any part of her body. The test also checks to see if chemotherapy is a viable solution. In Mom's case it would decrease her recurrance rate to 6-10%. Dr. Pratt released mom from her care and only wants to see her as a follow up in 6 months.

The next appointment was with Dr. Bagai, mom's oncologist. This was a consultation and decision making meeting. Dr. Bagai asked mom many questions about her health, how the tumor was found and how she was feeling. Then he walked through the oncotype DX test results. He basically said the same thing that Dr. Pratt said. But, he said that he was more concerned because the test also showed that mom's tumor, although small (1.5 cm) was considered agressive. She is also Estrogen receptor positive, Progesterone negative and her she is negative for a protein called HER2. All of these are factors in what treatment she is going to have. Dr. Bagai wants to be agressive with Mom's treatment. He walked through 2 options. The first option was with a mixture of 3 drugs in a 20 week treatment. This treatment would contain Adriamycin, Cytoxan and Taxol. The doctor told us of the risks with this and his worry because of mom's other health concerns-high blood pressure, diabetes, and a heart stint. The second option was a 2 drug mixture in a 12 week treatment. This treatment would contain Cytoxan and taxotere. Mom opted for this treatment. Once this was decided, the next steps moved forward very quickly. The doctor did a quick exam of the surgery site and then every started in motion. he wanted to start the treatment next week. The nurse, Cindy, told us the next steps. We are meeting with Cindy on Thursday afternoon to do a walk through of everything that she would be going through with her treatment (just like we did with Paula before the mastectomy). Mom starts her chemotherapy Thursday, March 4th at 9:00with blood tests and then the start up of therapy.

Our new world, for the next 4 months will consist of white blood counts, red blood counts and side effects. Let's get through this and get going with making sure that cancer is out of Mom's body and not coming back!

Family Week

Nearly a week ago, I posted about my Aunt Marilyn's doctor giving grim news about her prognosis. Well, Aunt Marilyn beat the odds and she should be settling into a rehabilitation facility as I write this. I stopped by to see her in the hospital yesterday and she was getting ready to be transported to the rehabilitation facility in the early evening. I hope that she was able to get transported and was able to settle into her new room. This is the third year in a row where she has had "her vacation" in the hospital and the rehab center. She bounces back and then goes on to her regular routine again. When she is ready, she will be going to her new home in the Normandy apartments. While it isn't exactly an assisted living apartment, it is a place where she and my uncle can get meals, have someone clean the apartment, go to social activities and have someone keep an eye out for them. My cousins, sister and I moved them in this week. It's a very nice apartment, just slightly smaller than their current condo. I think that Aunt Marilyn will like it there. Uncle Chuck has adapted to being there, but I don't think that he thinks that this is a permanent move for them. Time will tell, but at least they are at a place where they can get the extra help that they need.

We are counting down the days until the oncologist appointment on Tuesday. Okay, we really aren't counting down the days; it isn't something that we wanted to have to do. We just want to know what the course of treatment will be. Mom went to her primary physician earlier this week. She is adjusting her blood pressure medication because her sodium was so low during her surgery. She spoke with her doctor and he will be a part of her future treatment process. He will be working with the oncologist to give her the best possible medication treatment. I think that this helped calm my mom's nerves a bit. It is going to be a process that we will all be going through together.

Mom and I are meeting my friend, Barra, for lunch tomorrow. Mom can ask Barra questions about her treatment, her chemotherapy and how she felt through all of this. I am so thankful that Barra is there for me to ask questions about what my mom will be going through.

The picture above was taken at Christmas with my mom, her brother Bill and sister Marilyn.