WOW!

I can hardly believe that some people would have such a negative response to some of my friends recognizing we have a need and being willing to do what they can to help. It wasn't my idea to have a nanny but friends that I have who love and care about me, saw the need. Perhaps some people haven't been reading other parts of my blog, like the fact that I've been sicker lately than I ever have been. I'm in such rough shape they have stopped all treatment,(as of yesterday) to give my weak and worn body a break. Two weeks ago I was so sick, I thought I might actually be dying, thankfully after 5 days of IV fluid treatment I perked up. After many tests and Dr. visits I have been diagnosed with an additional condition that I may very well have for the rest of my life, it’s basically chronic “vertigo”. The only treatment for it is taking anti-nausea medications everyday, gravol is the only affordable one, the others are about $50 per pill. ( Some days it’s so bad I get it just from rolling over in bed, then I know it’s going to be a hard day) We’ve had to spend so much money on medications already for me this year, that we reached our $1200 pharmacare deductable in March, my stomach ulcer medication and anti-biotics were very expensive. My last blood work three weeks ago showed my white Tcells (immune system) to be very low, 1.6, desirable is over 10. My fever was 39.8, not good, my heart was stressed (probably due to the Herceptin (chemo) that I’m still on, that weakens your heart. My last heart muscle test about 5 weeks ago showed my heart had weakened by 3 points, not what we wanted to see. My liver was over producing a certain enzyme and there was fear that the cancer was growing in my liver, thankfully the ultra sound the next day showed my liver to be clear of cancer. I had a spinal tap done to be sure there was no infection or cancer spread there either. I’m losing so much weight so quickly, that it’s been hard on my system as the toxins stored in the fat are released into my body, making me feel like I’m on chemo still. Yesterday was as bad as a worst chemo day. Today I’m a little better, but not strong enough to handle even a quarter of what I use to be able to do.
Everyday I mourn the loss of time with my children. This has been the hardest part of what cancer has taken from me. But I rejoice in the fact the God has provided so many wonderful caregivers for our children, from my Mom, friends, preschool teachers, Sunday school teachers, Awana club teachers, other family members and of course Lizzy.
We were there for Lizzy when she needed us and she was there for us. We thought we had a very well balanced situation where Lizzy had a home during this difficult time in her life, and she was able to go when she wanted to move on, and she had schedule that was completely flexible (we got babysitters when Lizzy wasn’t available). We respected her space and continue to respect her belonging that are here. We told her many times that if she was in need for anything we were there for her, gas for her truck, or money for toiletries etc we gave her our debit card and PIN number and always trusted her. We believed that our relationship was built on love, respect and loyalty. Lizzy had room and board, her children were welcome in our home at all times (our girls loved playing with her children) Lizzy provided loving care to our home and children, just as any good friend would do. I’m grateful for her, and her 33 years of friendship. I wish the best for her and her family.
For some reason some folks on cancer treatment have a really hard time during the treatment months, and others have a harder time afterwards. I fall into the “afterwards” category. More or less, the last three months have felt like one long chemo treatment. My body has had a really hard time recovering from the radiation and chemotherapy. It didn’t help that I’ve had so many complications and set backs along the way. Such as having breast flap skin die after the mastectomy and having to have another surgery before that black dead tissue caused other problems. Then 3 days after that surgery I developed an Ecolli infection (from the hospital) and the surgical site abcessed and I was hospitalized for 4 days and given harsh anti-biotics, which made me as sick as the chemotherapy. I had a gapping open wound on my chest that had to heal from the inside out, for 6 weeks. I was unable to pick up my own children for 3 months.
Because of the infection, chemo therapy was postponed, not desirable for timely treatment. From my first chemo my white Tcells dropped drastically to 1.1 and I then had to have injections every two days for 6 months, after each chemo, so 50+ injections that Chris gave me. ( I’m so glad he’s able to give me injections, as I don’t know if I ever could on my own. I’m glad I haven’t had to try)
I had many harsh side effects from the chemo, many of which I’ve been experiencing lately as well. In mid January I thought I was sliding into home plate safe, when I developed a very large bleeding stomach ulcer, quite likely the worst pain of my life. Though last night I had such a bad migraine headache that I thought about going to emergency but I was finally able to keep Tylenol down once Chris gave me a shot of gravol. During that time I started to notice that I was having serious balance issues, stumbling, walking into things, dizziness, feeling like the room was tipping over on me etc. After much testing and seeing three specialist I now know I have a condition that could be for the rest of my life. Basically the motion sickness I’ve experienced my whole life from moving vehicles, I now get just from moving my own body. The only things they could suggest to make it better other than gravol, was to wear big wrap around sunglasses and a visor, to help limit the movement around me.
I’ve also experienced severe “chemo brain” which is a fun term used in the cancer world to describe the brain damage issues that can come from Chemo. The brain damage can be more or less severe and can be long term, short term or permanent . The most obvious one that most people talk about is memory loss, forgetfulness and short term memory loss. I’ve experienced all of these, mostly in the first week after each chemo and now for the last three months. My memory is so bad I got a daytimer to write everything in, but then I forgot where I put it, so I got a new one and forgot where I put that one as well. Not Fun.
Now to answer one of the intentionally hurtful comments…If my husband worked a 9-5 job and we put our children in full-time daycare during this time, there wouldn’t be the same response But because my husband is self employed and works different hours every week, mostly evenings and weekends, then daycare schedules of 6am-6pm. Don’t work for us. Besides if I put the girls in daycare then they wouldn’t be able see me when I do have the energy to get up and be there. I actually realized recently that the girls see more of Chris and me now than they ever did before I got sick, because then Chris was away working 80% more, but now he can do that work from home and be there for the girls more consistently, also I worked full time with daycare and waitressing. If we were full-time working parent’s who put their children in daycare full-time, not due to illness, this comment would never have been made.
Besides doesn’t it take a “village” to raise a child, and isn’t it a responsibility of the parent to invite people into the child’s life that will nurture them, care for them and teach them. If I happen to die from this terrible disease, I have peace in knowing that I made a real effort to build them a strong supporting “village”. For me to be a good mother to my children, I just have to “be” and God will take care of the rest. I do believe that one day in the near future I will realize that I’m functioning at a much higher level and won’t require as much support. But in the meantime when I feel broken and weak, it sure feels good to know that I have friends who are willing to do what they can to help, (which includes encouraging comments, not negative ones) Thankfully I receive a few hundred positive comments for each negative one. But they still hurt and cause me to shed many tears. Some of those tears are for those who made the thoughtless comments. It is my hope and prayer that they themselves are never struck with a life threatening illness, or their children.
For me it has gotten harder before it’s getting better, which is not only hard on me physically, but also emotionally and mentally. It’s been over a year now and it’s hard when the Dr. says that most women, after the treatment I’ve had, said they didn’t feel “normal” for up to 2 years. It weighs me down when I think of another year of this. But I look at my lovely girls and I’m so grateful that when I have the energy to be up and around, I can focus on them and my husband and not feeling bogged down with house work, because some gracious person has done it for me so I can direct my energy to my girls. How do people get through cancer at our age, with little ones with out household help everyday? I really don’t know. I certainly wouldn’t have done so well. My one friend had her mom move in with her for a few months and then her mother-in-law. She had less treatment than me so the time she needed daily help was less, but she did have the help. In other situations the person may have insurance through their job that helps them out during that time, which doesn’t help those that are self employed. I know some women who had to move in with family members and give up their own home. Thankfully there are enough kind hearted, loving, caring, compassionate people out there who are willing to help and I look forward to the day when I’m feeling much better and I can start doing again what I feel the most comfortable doing and that’s helping others out when I can.
Lisa came today to help with the girls, I was feeling okay, so when I can, like today, I went with Lisa and the girls to the park. I can’t drive, so Lisa drove the Van with us in it. The girls had fun playing and Lisa was there if a child needed to be brought down or ran after, these are things I can’t do yet, but I can still be there as Carmelle picked dandelions and handed them to me and said, “I love you Mommy.” We had a lovely day at the park, because I had someone there to help. I’m so grateful for everyone who comes along side and assists us in the raising of our beautiful daughters.