It was not a lost year

A couple weeks after my mom was diagnosed with cancer, a friend in his 30s was also diagnosed with cancer. He has a young daughter and has been keeping his own blog about his treatment and progress. In one entry, he talked about calling the summer of treatment his "lost summer." My mom is now done with treatment. Although we are all relieved that she is done with treatment- we have learned that with cancer you are never really "done." She will have follow up appointments with at least three different doctors (radiologist, breast surgeon, and the oncologist) that are spaced out in a way that she is meeting with a doctor every six weeks. This will continue for quite sometime, possibly up to a year. Even after that year, she will still have frequent visits to the doctors, they will just be spaced further apart. She will continue to take medications daily for the next five years to prevent this cancer from trying to invade her again. Now that treatment is "over" have been thinking about and reflecting on this last nine months of treatment.

I remember when my mom told me about the "spot" on her tests...it was probably cancer..there would be more tests...everything had to happen quickly. Shock. Disbelief. Hours later - maybe the next day - it all runs together - I remember being handed a massive pile of reading materials she received at the doctor.

"What kind of cancer did you say?"

"Inflammatory Breast Cancer."

"I can't find it in any of these stupid books."

"Keep looking, I think it is in there."

It was not in there. I went back to my home in Oklahoma City and I remember looking on the Internet. I was going to find out what this inflammatory cancer is.

I found it.

As my limbs went numb I began to quickly understand why this was not in any of those books. This is rare. This is aggressive. This is serious. This is very serious. This is a whole different ballgame. This may change my life as I know it. This may change all of our lives as we know it.

I feel like my person jumped out of my body as I read on. This type of cancer is so aggressive that by the time it is detected it can only be staged at at stage IIIB or stage IV. So you mean to tell me that at this point I am hoping that my mom has an advanced stage three cancer? Really? That this is what my prayers are focused on right now..."Please God, please, can my mom find out that she has stage three cancer...?" More shock. My mom did in fact have stage IIIB cancer. And the treatments...they were going to be horrible...long...aggressive...intense. To this day I cannot fully describe how she took it on. She was like a warrior mother. A warrior sister. A warrior Grammy. She has kids, a grandchild, sisters, brothers, friends, and she was fighting to be here with us longer. In no way am I saying that she was not bothered by the treatments. Who would not have some pretty intense "why me" and "it is not fair" moments? But you would hardly know it most days. She was determined that she was going through the treatments, she wanted the most intense dosage available, and she wanted to get on the other side of this cancer. Even as the her skin was burned and gone in places during radiation and the doctor said "we need to stop", she said she would keep going if that would help her chances. She was diagnosed in May and hoped to be done with treatments before school started. Obviously, not the case. I can see why someone would call it a "lost summer" or in her case "a lost year." But she did not. In between the treatments, the bed rest, the appointments, and the tests...she has has been living her life.

As I look back on these last nine months, I think about the living that has been done and the time that was not lost.

This year she was able to see both of her children celebrate anniversaries with their spouse.

This summer she swam with her granddaughter as she was able to swim for the first time by herself.

This year her nephew was accepted for medical school.

Her brother retired from the fire department.

Her son celebrated a birthday.

She celebrated a birthday.

She was present for sibling birthdays.

Her granddaughter started preschool.

Her granddaughter developed a love for talking to her Grammy on the phone and has had countless conversations with her about the things that three year-old children talk about.

She has been able to enjoy having a sister live in Tulsa after living out of state for several years.

She has enjoyed countless outings with her siblings.

She has been to watch her brother play hockey games.

She watched her grandchild play in her first soccer game.

She watched her church and work family pour unlimited support on her and her family.

Her son had a big Halloween party with friends, her grandchild dressed up like a princess, she had so much to be thankful for on Thanksgiving, and she celebrated Christmas with her family.

Earlier this month, her siblings met her and presented her with an "I believe in Miracles" ring to celebrate her fight against cancer and the joy she has brought to each of their lives. This was not time lost. This was time lived. It was not easy, but the hard part is over. To say that this time was lost, takes away all that did happen over the last year. I think my mom recognized this while it was happening (well most days anyway) and I think that is part of why she made an effort to be there for all those events and celebrations.

Now we celebrate that she is now on the other side of cancer. We celebrate that these special occasions and events were not the last time she would be present for them. Nine months is the time that passes before new life is given. In a different way, this last nine months have given new life to my mother - and to our family. We can appreciate in new and significant ways how we are blessed that she has been able to beat this horrible and aggressive cancer. We celebrate that there will be many more years ahead of us that will be greatly lived and appreciated. And we are hopeful and thankful that these years ahead are not has hard as this year has been.

Thank you all for reading and keeping updated on how my mom has been doing. I will check with my mom to see if she would like this blog to remain up. If it does, it will not be updated frequently as - thank God- there is no longer as much reason to. Our family does appreciate all your support and we recognize that this journey would have been much more difficult without your help. Your support has made getting to the other side of cancer seem possible. And now...back to living...

This is the latest report

The length and type of radiation my mom will do continues to change. She met with the doctor yesterday during her treatment. The doctor examined her skin, took awhile to think about her recommendations, and then told mom that she needs to do one more at this strenght and then three scans over the entire area at a lower strength. Then she will be done...four more total. Mom told the doctor she is willing to do the eight additional at the full strength that she had initially recommended but the doctor told her that at this point, her skin is so burned and if they push it any more, that she could have damage to her muscles that would affect her long term arm use. The whole treatment process is such a balance. How can we give the most treatment to treat and prevent the return of cancer while doing the least long term damage as possible? My mom has been doing some form of treatment for the last seven months and the doctor feels that her body is at the maximum that it will tolerate. So three days after today, my mom will go in for her last treatment. She will meet with the cancer doctor in several days to find out what the next step is as far as continued monitoring.

In Thanksgiving

This year on Thanksgiving, I was thanful for those I had around my table, especially my mother. It was wonderful to see her getting back to "normal." She was able to stay for a couple nights. She even had the energy to participate in the annual tradition of getting up way too early and going shopping on Black Friday with my mother-in-law. She was out for most the morning. I am also thankful for her good humor. My mother has a small amount of hair growing back in. Of course, there is just enough to see some color. My daughter has always seen my mother will all dark hair (um...with help from a professional) or with no hair. As three year-olds will, she remarked most honestly about the new hair "Grammy you have panda hair!" I guess you cannot get grey hair past a child. Many may be offended, but my mother thought is was hillarious and told Addison to come tell the family about her hair. I am thankful to have that kind of mom.

As far as treatments go, she is still doing radiation. Last week, she expected to have her last regular radiation session and would be starting booster sessions this week. Her doctor said after examining her that her skin is still in very good shape and, therefore, they would like to do eight more radiation sessions and then decide what boosters need to be done. They made this decision because the type of cancer (inflammatory) is a much more aggressive type and they feel that if she is able to tolerate more treatments they would like to do them. The doctor said they would hate to regret not being more aggressive while they have an opportunity. I know that she was hoping to be done with treatment by Christmas and with the extra sessions, this will likely not be the case. Mom is in good spirits about it and said she is willing to do whatever necessary to prevent the cancer from returning. Either way, we are looking at her being done with radiation by the end of this month.

And Many More

When I think back to previous family birthdays celebrated, I remember trying to get a card together, finding the "perfect gift", and maybe spending extra time with family. Tomorrow is my mom's birthday. Tomorrow is so different from previous birthdays. My mom has always been one of my favorite people...even when I was a teenager! Six months ago, I starting thinking about, and worrying about how many more birthdays my mom might have. What if this treatment did not work? We have been so blessed. This treatment has been working - better than expected! My mom does not have a mass of cancer sitting in her body. Tomorrow is a day to celebrate. Celebrate that we get to have my mom here with us, celebrate that her body is successfully battling cancer, celebrate that due to this - there will be many many more birthdays ahead. Happy birthday mom!

Things have been going really well. Mom has been doing very well being back at work. I know she does get a bit stressed getting to radiation treatments every day, but she has been able to make it there and back each day without too much disruption. Mom is so relieved to be back with her coworkers and with kids. She says she feels "like a normal person" now that she has a daily routine and has purposeful work to do each day. Her days are long since she does a full day of school and then does after school care as well. Most of her days are eleven hour days. She has been getting through them very well and she has been blessed to have several church families prepare meals for her three days a week. This has been such a help, now when she gets home she can just warm an already prepared meal and spend the rest of the evening relaxing and resting.

Where I Came From

My maternal grandmother, Betty Morris, worked as an administrative staff member for the Church of St. Mary. I do not remember much from her funeral except that the funeral was in the main church and it was completely full. It looked like Sunday Mass, but the church community was there to say goodbye to her. I also remember the priest holding up the opened ledger and talking about the entries for babies baptized - church members that received sacrament, all in her handwriting. Three of her five children attended the School of St. Mary, my mom and her two brothers. The other two did not attend only because the school had not yet been built when they were in school. When it was time for me to start first grade, I went to St. Mary. My brother is a year younger than I am, and he was a student in my mother's first Kindergarten class as a teacher at St. Mary. She has been there since. When I was going to school there, teachers that taught my mother were substitutes for my class. I have not been a student at St. Mary for over fifteen years, but when I go to visit, many of my teachers still work there. Those same teachers came to my wedding, most have met my daughter, and they keep up with my life through my mom.

How many places do you know where many of the staff members have not changed in fifteen, twenty, or more years? To me it says a lot about the community there, the support among coworkers, and the care given to the teachers by the school and church community. The amount of support my mother has received from the school and church community is amazing. My mom has been so well taken care of by her coworkers, parents of the school, and the church community. The types of support are extensive and have included things such as prayers, cards, visits at the hospital, forming a Race for the Cure team celebrating her, dressing in pink on the day of her surgery, meals being prepared for her, and several other tangible and non tangible means of support and love. I think about all of this as my mother prepares to return to work tomorrow. She is so excited to be back, as most people would if they were so blessed to work in the type of community she does. I know that she is also nervous. This will be the most physical work she has done since being diagnosed almost six months ago, and she has been really tired with radiation. She is worried about how the students will react to her. She does not have any hair and it may not be realistic that she can keep her head covered through the entire day. She is still recovering from her surgery and is very sensitive due to the radiation, she does not want the kids to be fearful of her, but at the same time, she knows she will have to set limits with them as she can not have the kids hug her too hard. But, the School of St. Mary is where we come from, it will feel like home for her to be back. She will be so well taken care of.

As I type this, I think that all the students there, with the exception of first grade and Kindergarten have been her students in the past. Most of the kids that have not yet been in her class have been with her during Sunday nursery or have siblings that have been her students. She is in some way connected to almost every student there. For those few that have not been her student yet - they will be soon - and she will love them. Who would have thought that the place my grandmother worked around fifty years ago would be the place my mother now works. Through the day tomorrow, I will think about how blessed my mother and our family have been to be part of St. Mary and I will know that since she is there, she will be well cared for on her first day back.

A couple treatments done...

So mom was able to do two treatments last week. She said she is glad she knows what to expect. On the second appointment, she had to wait a couple hours because both radiation machines were down. She was able to get done that day. She has about 25 regular treatments and then she will need to do a series of additional treatments on her incision site - maybe 5-8 additional. Her doctor told her that she will be able to get a couple weeks in before her skin starts to burn. She will return to work next week. We are hoping that she has a decent amount of energy to get through an entire work day.

Next Week

So over this previous week, mom has been to several appointments to have scans done and be fitted for a form to keep her arms in one place during the radiation treatments. The doctors will look at the scans to determine the strength of radiation. They told mom they would be very aggressive with these treatments (likely as her type of cancer is a rare and aggressive type that was at an advanced stage at the beginning of treatment). She will start treatments on Wednesday and they will be daily (Monday - Friday) for six to seven weeks. She has already started to take her medications that she will continue to take for the next 60 months to help prevent the cancer from coming back.

Mom has been doing pretty well over this previous week. She was able to get a ride to Oklahoma City over the weekend and watch Addison play soccer. She was very excited to be able to pick her up for a few seconds as she has not been able to do this for months. She stayed for several hours that day and seemed to do pretty well. I am sure this was helpful for her (and us) to feel like she is advancing in her recovery. BC (before cancer) it would not be uncommon for her to come to OKC 2-3 weekends a month and to stay for several weeks during the summer to spend time with Addison. I think this weekend was the third time she has been here since May. She was able to visit school last week and I know that she is ready to get started. She returns in just a couple weeks. She is starting to do some of the things she was able to do before diagnosis and treatment. Of course, she does get tired much more easily and you can see that she does not have the same physical strength, but it seems as though things are improving. I will keep you updated on radiation treatments.

And now, Radiation

Tomorrow will be mom's first radiation appointment. They will likely not start radiation tomorrow, but do tests and get the machines set up for when she does start. Several months ago, if felt this step was so long away. And, especially for mom, it has been a long road. I know that she is excited to get this started as it is another step towards completing treatment.

Follow up with Doctor

Monday was actually the third follow up with the doctor since surgery. This has been an exausting two weeks for mom. Of course there was the drain incident. Then last week, she went in and was told that there was not enough fluid to insert another drain and that the opposite drain would remain until at least the next week. Monday mom went to the doctor and was able to have her drain taken out. This is huge as it allows her to be able to have some freedoms of going places and eliminates the stress that the remaining drain would also come out. She has had some pain near one of her arms and the doctor told her this was due to nerves near the site the lymph nodes were removed. The pain extends down her arm, but since she has been able to do her arm exercises, she reported the pain has shown some improvement. The official pathology came back as well. She had one spot in tissue that has less than a two millimeter spot of consumer and something like ten of the lymph nodes removed had a trace of cancer.

This was expected. Even though her MRI did not show any cancer, her doctor had told her that there could likely be traces remaining that were not large enough to be detected by the tests at this point. This is the reason that it is so important that she continued with the surgery and with the radiation that will start in the next 2-3weeks. She has been doing well and in fact, told me that yesterday was the best day she has had since May! Her toe is now fully healed, so she has mobility to go a few places with her siblings and friends. She certainly has to be cautious to not do too much as she still is in pain and still gets tired very easily. I think that being done with the chemotherapy and the surgery has made her feel that there is an end in sight as far as the treatment. She is expecting a call in the next week or so to get an appointment scheduled to start radiation.

Another Trip to the Doctor/Hospital

I will start by saying that everything is now okay.

Friday in the early evening Addison and I were packing up our things to head back home. Mom had been doing really well after her surgery. I will skip all the details of her drains, but will summarize by saying that it was clear something was not working right. Mom called her doctor (it was around 5:00pm) to see what she needed to do. The doctor called back and told mom to get there right away. This was not necessarily an emergency situation, but more that the doctor had to be somewhere by 7:00pm and if mom were not there by 6:30 she was have to go to the emergency room instead. We were staying at her sister's house in Sand Springs and needed to drive to the hospital where the doctor's office is located. We made a very quick trip there. It seems that on one side, the drain was starting to come out which was the reason for it not operating properly. The doctor tried a few ways to fix it, but was unable to do so and took it out. She will need to go back Monday to have it put back in. She must have a certain amount of fluid built up before they can put another one it and this is the reason she was unable to place a new one Friday. Mom was discouraged about this, but it should not set back any of the recovery process. We left the office a little after 7:00pm. Mom is blessed to have a fantastic doctor that always will stay extra if needed and really puts her patients first. Mom is still doing well in her recovery and is being careful to restrict her activity so that she can fully heal.

Home

Mom was able to come home this afternoon! She is doing really well and seems to be getting around. She is very restricted with the use of her arms, but is learning ways to get around or move without use of her arms. She will meet with her doctor Monday. She anticipates starting radiation therapy in about four weeks, depending on how she is healing.

Update

Things have been busy and I am just getting a chance to update. Surgery went well. They pathologist said that he was having difficulties finding anything as he was looking through tissues that were taken. The first day was very difficult. Mom looked very pale, had difficulties sleeping, and was in quite a bit of pain. Today she got sick about three times in the morning. The doctor said she had very low hemoglobin levels any may need a blood transfusion by the end of the day. Mom is not able to use her arms to lift herself, pull, or really anything. This means that for even tasks like getting out of bed, she needs someone to help her up. She will have drains for the next 10-14 days which also complicate being able to get around.

By this afternoon, she was doing much better. She was able to eat for the first time. She did not end up needing a transfusion, and she has been able to sit up in a chair. She has been able to get more rest today and was even able to get up and walk around a bit. She looks much better as well. She would like me to tell everyone thanks for their support, prayers, and good thoughts. This will be a long recovery, but she is excited to have the next stage in treatment done. We plan for her to be able to go home tomorrow afternoon. So, I will try to get another update on here by the end of the week.

Surgery

Tomorrow mom will go in for surgery around 7:00am. We do not know when her actual surgery starts or how long she will be in the hospital. This last week has been pretty hard for mom. She has still be on restricted activity due to her foot and developed an abscess on part of her neck which has been very painful. I think she is ready to get this next step done. We are happy that she is going in to surgery without the cancer mass. This next step is so important because although she does not have cancer right now, once the chemotherapy starts to wear off, it will come back if she is not proactive in the treatment. I will update tomorrow evening once we have more information after the surgery.

Thanks and Glory to God

My. Mom. Does. Not. Have. Cancer.

That is right...

No evidence of cancer

cancer-free

the cancer is gone

the caner is gone

the caner. is. gone.

I have to collect myself to type more. My mom went in today to meet with the surgeon to discuss her mastectomy. She had her MRI completed last week (or was two weeks ago- they all run together). The test was done so that they could see the location and size of cancer to guide surgery. To our surprise, shock, amazement, her doctor told her that the scans show no cancer. Not that it is smaller, not that it has improved, but that it is GONE! Okay, just one more time folks...the cancer is gone!

Now that being said, my mom still has a lot of work to do to prevent cancer from returning. She will have surgery (double mastectomy) in less then two weeks. The recovery from that will take several weeks. During this surgery they will also remove lymph nodes that were PREVIOUSLY infected with cancer. This will affect the usage of her arms for a period of time. She will then do radiation every day for several weeks. She will also have to take medications daily for the next five years to prevent this from coming back. That is for later. For today,
the cancer is gone.

Extended

It seems there has been an endless list of appointments in the last few days and there are more in the next week to come. Last week, mom had her second MRI. This will determine where the cancer is currently as they prepare for surgery in about two weeks. From mom's perspective, the process of having the test done was much more lengthy and difficult than the last one. Yesterday she went to the foot doctor and (sigh) was told she would not be able to go back to work. This means she will be staying home until her surgery and then will start the time off for recovery from this procedure as well. I know that she was really wanting to get back to work, get back to the kids, to be around her very supportive (and wonderful and fantastic and loving - I could go on and on) coworkers, and get back to having a "normal" routine. She has accepted that this additional time is necessary for her health and has tried to not get too stressed about not being able to return.

On Friday, she will meet with the surgeon to go over the MRI and answer questions regarding the surgery. Next week she has another appointment with the foot doctor, an appointment to be fitted for orthopedic shoes (will help with the foot issue), an appointment with the cancer doctor, and a preop appointment. This will be the most activity my mom has had in several weeks as she is not to be putting any pressure on her foot. She seems excited/anxious to get to the surgery. On the checklist for treating her type of cancer she was given four things: chemotherapy, double mastectomy, radiation, and hormone treatment through medications. She feels that once the surgery is finished, she will have worked through the most difficult parts of the checklist. I think it will feel like a large step towards recovery. And, I must admit, the mental image of the doctors actually removing this horrible cancer from her body during surgery is just glorious.

Update

So as it turns out, we were not able to visit mom this weekend. We had the car packed up and as we were loading, Addison kept complaining that her throat hurt. Since mom has a weakened immune system we stopped by the walk in clinic on our way just to make sure. Turns out she has a double ear infection and tonsillitis...no trip for us. May have worked out better this way. Mom said that this treatment has been very difficult for her. This makes since because each treatment is not its own, it is more cumulative. So this treatment also included what remains of the previous seven as well. She said she was much more tired even the day after treatment. She said she took two naps (pretty good since she has not been getting much sleep). She says she has been in pain and that the anxiety has been back as well. When I talked to her last night, she seemed to be doing better. Additionally, she said that her foot has made significant improvements and she is hopeful this means that her surgery will go forward as scheduled.

Put a check by this one

On the fighting cancer "To Do list" finishing chemotherapy was a huge step. As I type, mom is walking (very slowly) out of the cancer treatment center, her veins full of the chemicals necessary to attack the cancer cells and rid her of them for good. This was the last scheduled treatment. She is now done with chemotherapy. Of course, as the chemicals will attack the cancer, they must also battle with everything else in her body - uncluding her blood cells that would be fighting infection. Her doctor is putting her on antibiotics to help fight infection from her foot once her white blood cells are weakened. The hope is this, along with the precations she is taking with her foot, will eliminate infection so that she can go forward with her surgery as scheduled. Surgery is the next big check to put on her list. We are hoping to be able to visit this weekend. With all the foot problems, we have not been able to see her in a month. I believe this is the longest she has gone without seeing Addison - ever.

Update

It looks like mom will be home for another two weeks. As you can imagine from the information from the previous post, she has been upset about this. This time may be a little easier as she will be allowed to do very very light walking. This will mean she can walk to the kitchen or that if someone picks her up, she may be able to walk to her car and go have bed rest at their home for a few hours. This may sound funny, but I am sure once you have been in your room and nowhere else (except chemo - but that really does not count does it?) that being able to do bed rest somewhere else could really elevate your mood. I am sure her siblings will be picking her up soon. Mom's big adventure for tomorrow will to go to her chemotherapy treatment. This is the last one!

Things are getting pretty tough

I have not posted in several days because I have not been sure what to say. These last couple weeks have been really hard for mom and I wanted to obtain her permission before posting. Mom is still essentially on bedrest. It has been about two weeks now. She is not supposed to get out of bed even to go in the other room to fix or eat dinner. She is not able to walk around to get ciculation or look out a different window. She can go from her bed to the chair in her room. She must take special care to stay off her foot at all times if possible. Of course anybody would want their body to heal. This is especially important for her as she has very stong chemicals running through her body that affect her blood counts, as she has a weakened immune system and is suseptible to infection, and as she is preparing to have a major surgery in a few weeks. All these reasons increase the importance that she follow all the rules her doctor has given so that her foot can heal.

First of all, the pain from the previous chemotherapy treatment has really been hard for mom to take. The first few days after seemed to be going pretty well, but the pain has been increasing since then. She has pain in her joints and especially in her knees. She does have prescription medications to help manage the pain; however when she takes the medication, it causes her blood pressure to drop too low. This leaves her with trying to find the balance between a safe blood pressure and relieving some amount of pain.

Second, she is experiencing excessive anxiety symptoms. This is not surprising - she is dealing with a lot. In some ways the cancer diagnosis is still setting in(for her and for us). It is hard to believe that it was only three months ago that she was diagnosed. Her body has been through so much trauma already and she has so much to go (one more chemotherapy, surgery, raditation, and several tests). I think this has all become overwhelming for her. She also loves her job and the kids she gets to work with every day. I know that she has anxiety over not being able to work and not being part of their school year yet. She is so ready to get back to work, the kids, and her coworkers. Mom is so accustomed to being able to do things for herself. It has been very difficult for her to rely on others to bring her meals to her, to take her to appointments, and even to substitute for her at work. Both the pain and the anxiety have led to difficulties sleeping. I know that several days may pass with only a few total hours of sleep.

As I said before, I asked for mom's permission before posting this. She told me that the point of doing the blog was to let people know how she was doing - good and bad. I have tried to keep things general without going into too many details. When it comes down to it, this is all part of dealing with cancer. Cancer is a horrible disease and we all look for a day that nobody has to deal with this anymore. Now I will tell you, that as my mom talks to me about some of her symtoms she adds this:

"You know, being at home I have had no choice but to watch a lot of television. I have seen so much about the miners that have already been trapped for so long...they may be down there for so much longer. When I think about that, I don't think I have much I can complain about."

Of course that is what my mom says...of course it is.

Pretty Good so Far

So I have checked in with mom and not too many problems with pain at this point. I know that she is getting bored of staying in bed all day, but I think she also recognizes that this is may be part of not being in so much pain.